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Tuesday, July 25, 2006 3:10 PM CDT

Hello friends and relatives,

We are having a busy and great summer so far. I have not updated for a while. Last time Julia's counts were all good and went something like that (recording for history's sake):

WBC 7K
Platelets 240K
ANC 2500
HGB 12.4
HCT 34

This was back in June and the next checkup at the clinic is scheduled for July 31st.
Julia recently reached an important milestone. On July 7th last year she finished her 2 year and 2 months chemotherapy treatment. It has been more than year now that she is off treatment!!!! Which also makes her a 3 year+ survivor.

A couple of weeks ago we were at the pool and Danik noticed a strange mark on Julia's foot. I thought it was a speck of dirt, but it turned out to be a new diamond shaped mole. The dermatologist says that it is fine, but he found a different mole on her hip that looked suspicious (bigger than I remember it and undefined borders). So last Saturday (July 24?) a plastic surgeon removed it. Julia is healing nicely, still has stitches, and we are waiting for the biopsy results. Most likely it is benign, but as usual we appreciate good thoughts and prayers.

What else is new this summer? The girls are both in the Creative summer camp and are enjoying its craziness. Leah learned to swim FINALLY and can now do a couple of yards, mostly underwater. We moved to a next door condo last month as well. On top of everything else, I am having school during summer as well at full swings and tomorrow is my comprehensive point location final. Why am I writing this journal instead of studying? Maybe I need a little break ;)

Julia has been feeling great and enjoying the summer. She continues to receive acupuncture treatments from Tuan every week and about montly Reiki/cranio from John.
This Sunday we went to the zoo which turned out a little more gruelling than I expected - we took the metro and walked. The bonus was that we got to see the pandas (Tai Shan and her husband) eating icicles at the zoo. Apparently it was some kind of feeding time because we also got a chance to observe the elephants eating really close and they are amazing. The girls had a chance to ask questions about elephants and the guy who works at the zoo gave them really good answers. I guess now we are done with the zoo until next summer or so ;)

Well, as usual thanks so much for stopping by and sending Julia prayers and positive thoughts. I will write more once her mole biopsy comes back and after her next clinic appointment.

Love
Lola

Friday, May 12, 2006 7:05 AM CDT

Hello again!

I am so mad, just typed a big update for Julia and accidentaly deleted it! All right, here we go again.

I felt that the month of April is a challenging time for Julia because of its changing capricious weather. Luckily she went through it pretty well with just minor sniffles. Tuan was supporting her with acupuncture and I was doing moxa and acupressure at home, almost daily. Leah also has been suffering never-ending sniffles, probably caused by the abundant pollen.
Julia had a pretty good check-up on April 24th. Her counts were perfect:

WBC 6.7K
HGB 12.1
HCT 35.3
Platelets 244K
ANC 2800

We had another discussion with her oncologist regarding the bone density scan. I am not too crazy to jump on this idea because Julia does not experience any phenomena indicating that she has reduced bone density. Plus she is taking calcium/vit.D supplements and does enought weight bearing activity for prevention. She has had so many x-rays while she was on treatment that I am not very interested to subject her to a long 10 minute long X-Ray just in case she has reduced bone density. And anyway, even if she did, I would probably go no further than what I am already doing to help prevent fractures. So I am trying to find a way to deliver all of this to her doctor without offending the whole medical profession. I think that our team of doctors and nurses is great. They are all very caring and knowledgeable and I acknowledge their expertise. However, I am approaching this from a different perspective and I don't want this to cause opposition between us.

On May 8 it was 3 years since Julia's diagnosis. She is 8 years old now, roller-skating maniac and a book worm. This week she is going on yet another overnight camping trip with her class. Again, I am having a slight fear about that, but last year she had such a great time with her classmates that I cannot even consider not letting her go again. So I just have to suck it in and let her enjoy going camping again.

Julia continues to see Tuan for acupuncture weekly and John for Reiki/cranio about once a month. I am so lucky to have met them just in time. I am grateful to Julia's team of doctors and nurses too. She is here today, 3 years later, and I feel that we are very lucky.

Thank you all for continuing to check on us and sending Julia prayers and positive thoughts.

Love
Lola

p.s. Since my last update, I finished my second trimester and advanced to the third with all A's ;) This week I am doing a traditional diagnosis on my first "patient" and I am a little nervous about it.

Thursday, March 23, 2006 8:02 PM CST

Hello again ;)

Is it ever going to get warm around here?
Julia had her regular check-up about 10 days ago. Her counts came back slightly lower than her new normal, but still in the normal range. No one seemed worried about it now. At the same time, she was just over a cold or starting a new cold (or both).

The counts (approximately because I got them while driving) are:

WBC around 5K
Platelets 208K
ANC 2000ish
HCB 11.2
HCT 35ish

Since then we all had a bout of new cold (again except Danik miraculously). Apparently spring is a challenging season for Julia and this is the opinion of Tuan as well. She is getting extra support through acupuncture and Reiki as usual.

We had quite an eventful week medically, though not with Julia (unless you count her lasting cold after cold this month). My step-father Alik had another heart attack 2 days ago, on the same night as Masha (my sister in law) had an attack of appendicitis. We can actually laugh a little bit about something that happened in the ER that night. Apparently Masha was beeling wheeled on a stretcher in the hospital hallway and she told her mother that perhaps she is hallucinating from all that morphine they gave her for the pain, but she thinks she sees Alik and Nelli in the hallway. Of course, her mother started dismissing that until they literally ran into each other. What a coincidence! Well, Masha is fine now and recovering. Alik is home now too - his blockage was too small for a stent, so he did not get much treatment - just more of beta blockers and high blood pressure drugs.

Well, that is it for now. Julia had another treatment with Tuan today and I keep giving her moxibustion treatments too to build her up during this challenging weather. Tuan thinks that once the weather stop fluctuating so wildly, Julia will feel much better. For now, her cold seems to be going away and she is not coughing as much as yesterday.

Well, as usual thanks for checking on us! And thank you for your positive thoughts and prayers for Julia.

Love
Lola

Monday, March 6, 2006 11:13 AM CST

HAPPY BIRTHDAY TO JULIA!

I cannot believe it but she is 8 years old already ;)

We had a fun birthday party yesterday. About 12-13 children (almost all girls with the exception of 2 boy cousins) showed up. We were expecting a lot more kids, but unfortunately a stomach flu is going around....

We had a magician show and pizza and cake followed by pinata. Julia was happy to be the one to break it. She received a lot of presents and this is the first year that most of her presents were books. Not a lot of toys - yeah! Julia loves to read so this is great. Of course, Leah got some toys from all grandparents who were feeling that she would be upset if only Julia got the gifts.

Julia has been feeling pretty good, a minor (very minor) cold is almost completely gone. We have a clinic visit this Friday, so please send positive thoughts and prayers for a good check-up and normal counts, as usual.

Thank you for all your phone calls and birthday wishes on Julia's birthday!

Love
Lola

Saturday, February 11, 2006 7:41 AM CST

Hello everybody!

No updates usually means nothing to report. We had a pretty busy beginning of the year with endless appointments to Julia's orthopedist and other stuff such as school and life in general ;)
The big news is that JULIA'S CAST IS OFF! Her bones are healing beautifully and her muscles that atrophied while she was wearing a cast are growing back! And shame on me, I am just now posting her picture in a cast (that's the only that came out allright, meaning no red eyes and the cast is visible).
On Monday 2/6 Julia had her clinic appointment. She grew about 3.5 cm since December and gained a couple of pounds. Her counts came back and they are perfect!

WBC 7.3K
ANC 3020
Platelets 240K
HGB 11.9
HCT 36.5

What can I say, this is beginning to feel like a normal life :) (saying this while furiously knocking on wood). Both Julia and Leah are enrolled in Strathmore dance classes (hip hop for Julia and jazz for Leah), and for the first time in their lives we can actually WALK to these activities! Julia had one very nasty cold before the New Year and ended up on antibiotics for a juicy cough and fever. Other than that, she has been pretty healthy. Tuan is giving her acupuncture weekly and we still see John for Reiki about monthly. As for her supplements, we are really down to pretty much one thing - either Host Defense or Maitake, both immune modulators. THankfully Julia likes what we call at our house "red tea", which is a tea made from rosehips, hibiscus and a little green tea. Usually she has a couple of cups of that tea (I make it pretty strong).
Julia is reading everything in sight! It seems to be her favorite activity now and she almost never plays with dolls or toys unless Leah sucks her into it. Her birthday is coming up next month. On March 5 Julia will turn 8!!! This sounds very grown up, does not it?
My school intensified immensely. We are getting into serious acupuncture theory and by the end of this trimester we will have covered pretty much all the basics of diagnosis and treatment which will be deepened for about one more year before we start treating patients. Danik plays a lot of guitar lately, and while he is perfecting his skills, one of the pieces (Spanish dance #5 or something like that) became my ear worm.

Thank you all for stopping by and continuing to send positive thoughts and prayers for Julia.

Love
Lola

Thursday, December 29, 2005 9:27 PM CST

Well... it is always something!
Julia broke her left arm today - both bones, radius and ulna!
She was in her gym class when she jumped (flipped?) off the balance beam into a foam pit and landed on her arm. When I came to pick her up, she was crying in pain. It happened right before the end of the class. We went to see Tuan first for acupuncture. After he looked at her arm, he knew she had a fracture. So after having a few verbal telephone fights with a couple of different receptionists, I took her directly to be seen by an orthepedics doctor. Her fractures are very small and hair thin. She is expected to heal quickly. However, she will be wearing a cast for the next 7 weeks or so. Of course, she picked a hot pink one, we all signed it already!
Tuan actually immobilized her arm with a couple of holiday cards and a tape I bought at the pharmacy even before the cast, so Julia started to feel fine and was not in any discomfort very quickly. The cast is kind of awkward. It is also pretty heavy so she also got a sling for carrying her arm in it!
She and Leah also picked up a virus last week, had vomitting, a day of fever, then about a week of sniffles and now some cough. I am glad that Julia is getting acupuncture now, a lot of kids end up with pneumonia as a complication of their colds this year. I cannot wait for the winter to be OVER.

I also cannot wait for this winter break to be over, both for me and the girls. It is too nasty to be outside, the gymnastics is out of the question, and we are bored! I cannot wait to return to my school as well. I successfully passed all my finals and entered the Level 2 part of my acupuncture program (Level 2 is several trimesters long, then finally Level 3 is clinic!)

So please send us some healing thoughts for Julia's arm and for her to remain in good health overall.

AND HERE IS TO A HAPPY AND HEALTHY NEW YEAR, EVERYONE!

Love
Lola

Tuesday, November 22, 2005 8:26 AM CST

Hello everyone!

Well, Julia is doing pretty good! We had a clinic appointment yesterday (it was rescheduled from previous Monday because it collided with her Reiki/cranio session).
Julia's counts are excellent right now. The whole check-up was quick and easy. Except for the fact that Julia refused to get her flu shot.

HGB 12.4
HCT 36
WBC 10.4
Platelets 277K
ANC 6000

I am going to ask Tuan and John and a few of my classmates what they think about vaccinating Julia this year. What I really would like to avoid is messing with her immune system right now as it is recovering, unless necessary.

My birthday is today and I am happy to be 35! Thanks to everyone who already called in the morning. The kids gave me their "presents" this morning and Danik too! Leah's card said, "Happy birthday, Lola 53" I guess for her there is not a big difference between 35 and 53! Julia is always prepared, she gift-wrapped birthday presents (usually something from her room) for me and DAnik several months in advance.
Yesterday, I really impressed Julia. I was on the computer writing my essay for school, and she came up to me and asked to sit next to me in the sweetest voice. My laptop is in the kitchen so got on the counter and told me, "Mom, you continue to write, I just sit here quietly next to you for a few minutes." Meanwhile, she is inching closer and closer to the candy bowl on the shelf next to my laptop. Eventually she grabs a chocolate truffle and leaves saying "OK, mom, I gotta go now!" I pretend that I don't see any of it. An hour later, in a casual conversation, I mention to Julia, "So was that candy good?"
Julia: "?!?!?!"
Me: "You know I can read your mind"
Julia: "Wow"

I really reinforced the concept based on a Russian children's story that we red recently "Every hidden thing eventually comes out." Today in the car Leah, who was even more "impressed" by this exchange, asked me in the car if I can read her mind while she is in school. Of course, I said "Yes"!
---
Danik's birthday was on the 17th, so finally we are getting out of this birthday season soon. Until March that is. Julia will be 8 on March 5, this sounds very grown up!

I will try to update more frequently and post new pictures soon. The thing is that my school is keeping me very busy - there are some weeks when I have to be there 3-4 full days in a row! I enjoy being there and the material is incredibly interesting, however, it leaves very little time for anything else. Then Julia has at least one appointment (acupuncture), sometimes 2 every week. We saw John for Reiki/cranio last Monday (11/14). He spent extra time working on her chest because she was (still is, a little) congested and coughing. This cold just lasts and lasts! Thankfully it looks like Julia is almost over it now. Other than that, I really cannot complain about anything. (well, I can always complain about homework, but that is OK).

So.... thank you again for stopping by and for your notes in the guestbook.

I also would like to thank everyone who went to Clare's website to read her incredible story and left notes for Clare's family.

Please continue to send Julia positive thoughts and prayers!

Love
Lola

Monday, October 31, 2005 1:11 PM CST

Hello again and HAPPY HALLOWEEN!

Our big news is that Leah turned 5 on October 22nd! She got her wish and celebrated at Build-A-Bear so now our collection of stuffed animals got even bigger :)

I and the girls (again Danik has mysterious immunity) are in the various stages of the same cold. I have had this thing for almost 2 weeks and it's not going away! Julia caught it last week and right now she is feeling pretty good, but still has a nasty sounding cough. I am keeping my fingers crossed that she will get over it soon. Leah has a stuffy nose. Danik is the only healthy one!!!

I had a week off from school (reading week), but now I am looking forward to classes this week.

Today we are going trick or treating. Julia, as usual, is going to be more than one thing. Her costume is a quarter vampire, a quarter devil, a guarter witch, and a quarter "the mean girl person." I will try to put up new pictures soon. Leah is wearing her real spanish flamenco dancer's outfit that grandma brought from Spain this year.

Julia continues to have regular acupuncture treatments. Thankfully her yeast infection is gone, and other than the cold, she has been feeling very good.

I appreciate your warm notes in the guestbook and your positive thoughts and prayers. Julia's next check-up is on November 14th. Please pray that her counts continue to be stable and in the normal range.

Love
Lola

Thursday, October 13, 2005 11:00 AM CDT

Hello again,

I am just writing to report about our last few weeks that have been very hectic, in a good normal way. Julia had her check-up last Monday October 3rd and her counts were virtually the same as they were in August.

WBC 7.23K
HGB 12.2
HCT 36
Platelets 252K
ANC 3820

These are really good normal counts for a healthy person! I was so happy because I really had no idea what to expect after the terrible cold with fever that lasted a week in September, a 10 day round of antibiotics and an yeast infection that only now is clearing up. Julia's life is pretty much the same as for any other 7 year old 2nd grader except for the check-ups, blood draws and weekly acupuncture. It is interesting that our acupuncturist can tell withou any blood test how good her counts are using Chinese medicine diagnosis. He has always been right! Julia is again taking Musical Theater classes this fall, and the Russian school on Sundays. She is still not reading fluently in Russian, but she just swallows books (in English).
Leah will be turning 5 next Sunday. And she still looks like she is barely 4 - she is only 37.5 inches tall! What she lacks in size, she compensates by her temperament!
Danik's news is that he is finally getting his Hasselbladt (spelling?) camera that he took about 6 months to choose. I think it is supposed to arrive today so keep checking for some black and white pictures on this page (hopefully it won't take as long to produce them as it took him to select and buy this camera).
As for me, I am still coming to terms with Clare's passing. Her parents' wrote an elloquent journal of her journey and somehow her story came out beautifully inspiring despite its sadness. I was happy to read their last uplifting entry. There is also a new wonderful picture of Clare and her mom and sister Phoebe on her site.

Being in school helped me cope with my sadness as my school is a healing environment. It also keeps me very busy with classes, homework (writing essays, documenting observations, taking 40 pulses a week). Yesterday we had our first clinic observation class for which we are required to wear white lab coats. We did not have a patient come in the first time (we had our teachers show us what to do during observations), but next time we will observe real patient treatment and participate too! The classes are very hands on because the school's philosophy is that every practice needs to be embodied. We do a lot of silly stuff in school too which helps us understand memorize material. For example, every week in acupuncture theory class we learn about a new element (so far we had Water, Wood, and Fire). Each element was taught as if it was a theater class, we reenact these elements in our exercises, dancing, talking, eating certain things. For example, when learning about Fire, we interviewed a person whose element is Fire, observed him, danced disco music, lit candles, ate chocolate covered espresso beans (bitter taste), etc. Do I need to tell you that it is easier to understand fire this way versus reading about it in a book? To learn acupuncture points, we listen to the lecture, then we break into pairs and mark them the points with gel pens on each other. And that is how it goes. I will probably never be able to describe it well, so I will stop here and contain my excitement. I still cannot believe my luck that I get to do it!

So thanks again for checking on us. Please send some warm thoughts to Clare's family.
As usual, we are grateful to everyone who is thinking of Julia and keeps reading this journal now that she is done with treatment.

Love
Lola

Friday Sep. 30 update

Clare passed away yesterday. There are no words to describe my sadness right now.
Love
Lola
--------
Monday, September 19, 2005 9:35 PM CDT
Hello again and sorry for a long break in updating.
Usually no updates means that life is perfectly.... crazy, as it should be. Since the last update, we went to the Ocean City and stayed at the Children's House by the Sea. This vacation was a gift from Believe in Tomorrow Children Foundation and we enjoyed it thoroughly. Julia had a terrible cold with fever the entire time and we even had to find a pediatrician at some point. She developed an ear ache and we got antibiotics to treat the ear infection. So this cold made our vacation somewhat stressful but Julia loved the beach and especially going to the Amusement and water parks. Her favorite was the water slide, the kind that I was afraid to get on!
As soon as we came back and regrouped (during the labor day weekend), the school started for the girls and for me. Thankfully Julia's cold went away at that time as well. I spent the first two weeks of September immersed in intensive classes. The kids stayed in after school care and were such good sports about it. Being an acupuncture student is my dream come true and to this day, I cannot believe that I got to finally do it. It took me a while to start because of some uncertainty, Julia's appointments and some prerequisites that I had to take. I am still finishing my nutrition class (prerequisite). However, this was definitely worth it. I have never felt so "at home" in any environment as I feel when I am with my fellow students. Now my schedule will be less crazy with classes mostly scheduled 2 days (8:15 am to 5 p.m.) a week.
Julia is back to seeing Tuan for acupuncture and she had a wonderful session with him on Saturday. Today John saw Julia for Reiki/cranio work which was amazing as usual. Where would we be without our wonderful healers? As far as clinic check-ups go, we have not been there since August 13. I was supposed to bring Julia this week, but there were no openings so luckily the nurse agreed to postpone Julia's check-up until October 3rd. Julia's rash is much better but she still has patches of dry skin which is not nearly as itchy as it was last month. Her appetite is normal and slimmed down a little. She also seems to have grown pretty tall over this summer, but I don't know how much exactly.
Thank you for checking on us, as usual. I will continue to be grateful to anyone who finds time to send Julia prayers and positive/healing thoughts.

Clare (http://www2.caringbridge.org/md/clareschmidt/)continues to need more prayers now, as she is unfortunately still on the heart/lung machine while her lungs are healing. Her parents, Karen and Benno, are amazing and wonderful people, and Clare's sister Phoebe is a hero who donated her bone marrow for transplant. Clare needs urgent prayers/healing vibes so that she can get off the ECMO machine. This machine is great but from what I learn from her site, it is risky to be relying on it for too long. So please stop by her site and pray.

Love
Lola

Friday, August 26, 2005 10:44 AM CDT

Hello again,
Tomorrow we are going to the beach again!
Since we went blackberry picking yesterday, I want to share some pictures from that trip. (well, I also want to play this feature of inserting picture links too).



Julia's front top teeth fell out recently and she now looks a little vampire-ish.


Leah, who normally could not care less for blackberries, ate a whole bunch of them while picking. Apparently they taste a lot better right off the bush (or tree? whatever, I am not a farmer, :)

I think I can't look at another blackberry for a long time.


We are looking forward to another week of sun (hopefully) and then the busy school year will begin.

Thanks for checking on us!
Love
Lola

Well
Lola

Friday, August 26, 2005 10:44 AM CDT

Hello again,
Tomorrow we are going to the beach again! Since we went blackberry picking yesterday, I want to share some pictures from that trip.



Lola

Monday, August 22, 2005 10:17 PM CDT

Hello friends,

As you can tell from the pictures, we just came back from the beach. We spent a week in Sea Colony with our friends and their two girls. This was a very fun time, especially for the girls as we got to explore the beach, the bay and the boardwalk. Julia has been feeling pretty good and except for her small itchy rash (mostly on upper body), she feels great. Leah is getting over a small cold, and I hope that Julia won't get it.

Please send more prayers and positive thoughts to Clare who is having a setback with her breathing. The doctors had to put her back on the vent and today Clare has been connected to another machine which will allow her to get oxygen instead of the vent. Apparently this is a pretty drastic measure, but this is necessary to allow her lungs to heal and rest.

As usual, thanks for checking on us.
Love
Lola

Tuesday, August 9, 2005 1:12 PM CDT

Hello again!

Yesterday Julia had her monthly check-up and everything checked out fine. Her counts came back really nice (whew, her ANC was only about 500 last month), so it was a big relief to find out today!

WBC 7.2K
HGB 12.2
HCT 35.1
ANC 3690
Platelets 239K

These are all in normal (or close to normal) ranges for all counts! YEAH....
The only thing that is bothering Julia at this point is eczema-like rash. Her doctor thinks it is dermatitis caused by Bactrim (the only medication that Julia is still on, preventative antibiotic) and sun exposure. Personally I don't think so because she has been on Bactrim for the last 2 years and never had sun sensitivity, but it is possible that her recovering immune system went into overdrive a little bit. It is not too bad though and extensive use of moisturizer and tea tree oil cream takes care of it pretty nicely.
The camp is all out and the girls are spending time with me. It is getting a little boring for them since all we do is hang out (home, pool, a couple of playdates). But I like that we don't have to rush out in the morning. All of this is going to change in the fall when the girls will restart school and I will start my own too! It will be CRAAAZY but as long as everyone is healthy, we can manage it :)

This Sunday we will be going to the beach for a week so this should break the routine.
I want to conclude this entry with the poem that Julia wrote yesterday.

LIFE

L - Life can be hard
I - It can be easy
F - Find your way to be happy
E - Everyday choose your way

BE HAPPY
I did not know that she was into Zen :)

Also, please continue to pray/send positive thoughts to Clare (Update on Clare) who is still in the intensive care, on a ventilator, battling complications of her transplant. She made a transition from an oscillating ventilator to a standard vent but she needs to breathe on her own soon.

Thanks to everyone who visits Julia's page, thinking of us and sending us healing thoughts :) And thanks for your entries in the guestbook!

Love
Lola

Friday, July 29, 2005 8:59 PM CDT

Hi everyone,

Sorry for a big gap in updating. As you probably guessed, no updates means we are living a kind of normal life right now :) YEAH! The summer has been really good to Julia, just like last year. The fact that she is not taking any more chemotherapy makes it even better. She feels pretty well and seems very happy! The only thing minor medical issue is a barely visible rash on her face which I believe is common for kids who go off treatment. I will bring it up at her next check-up which will be on August 8th.
Both girls are done with their camps as of today. Julia has had an amazing experience at the Creative Summer camp, swimming, playing tennis, and doing many more activities daily. She loved it, especially because her best friend since she was 2 years old was there too. There were only girls in her group which she did not mind at all! Today they had a performance and it was so fun to see Julia on stage doing the Yellow Polka Dot Bikini dance. So the time went so fast and it is hard to imagine that summer is 2/3 over!!!! Except I really enjoy our freedom from all the medical issues at this moment. I want it to last! I don't want the fall with the colds and flu, etc.
Julia continues to receive acupuncture treatments (weekly) and Reiki/Cranio (montly now). She seems more balanced now than when she was on treatment. As for her supplements, she takes only Host Defense (mushroom mix)+ Milk Thistle tinctures with cranberry juice(undiluted, pressed), green tea and water. It is a very sour drink, but she does not mind it, and I try to get her to drink it twice a day. Most times she does not finish all of it, but she gets most of it in. She loves sour stuff and can eat lemons! Julia has also been eating better since stopping steroid pulses. Thankfully she likes healthy things like fruits, nuts, tomatoes (at least most of the times) and she stopped craving pizza all the time. Whew. I hope that she soon loses some extra weight that she accumulated thanks to steroids and inactivity. Right now she is very physically active and I hope to enroll her into our YMCA in the fall where we have a heated outdoor pool open all year round (I hate indoor swimming pools).
Leah has learned to swim with a floatie all over the pool now and she can even jump into the pool from the edge without fear. This makes a big difference even though she still cannot swim without this floatie thingie. Hey, more freedom for us (the parents, I mean). She is also a maniac animal lover and talked us into getting a hamster! Why, why did we need a hamster? He is a cutie though (long haired) and we named him Chappy - this is how Leah used to spell Claire (her middle name), don't ask me why! So the girls are in bliss, or had been in bliss for a couple of days right after acquiring Chappy. If you did not know, it takes about 2 minutes and $30 to buy a hamster and all the accessories that he needs (cage, bedding, etc.) It is so frighteningly easy, I am afraid we will end up with a small zoo by the time Leah is old enough to leave for college!
Well, that's it for now. Please continue to send Julia positive thoughts and healing prayers. She has a long road to the full recovery, but we are very optimistic and positive!

Thanks for stopping by!

Love
Lola

Tuesday, July 12, 2005 11:45 AM CDT

Hello again.

Well, here we are, done with treatment (chemotherapy that is), and Julia's counts are still low.

WBC 1.7K
HGB 10.6
HCT 32.6
Platelets 179K
ANC 520
Monos 14 percent

Julia had a check-up and a CBC (blood test) done yesterday. She feels good and looks good. Her weight was 57 lbs and height 117.5 cm. Our NP thinks that the counts are low due to her cold (ear infection) last month and the fact that she just stopped taking chemo last week. The monocytes are pretty high, so hopefully everything will continue to recover into the normal range.
Julia started a new summer camp this week and Leah is very upset that they are now separated. She kept whining today on the way to the camp(s) that she should be in the same camp with Julia and no amount of explaining that this camp was full (and it is true, I applied in January) convinced Leah. She kept bugging me to ask them, could not they just take one more child (her)! Oh, I just love how 4 year olds reason. Julia has been swimming all summer so far and she is very fast. She is still limping a little (barely noticeable), but her oncologist does not think it is a side effect of Vincristine, which is one of the IV medication/chemo that can cause nerve damage. Julia did sprained her ankle just a tiny bit a few weeks ago, so she is probably walking like that because she is protecting that foot.
Leah is very stubborn and afraid of swimming. Now she has a floatie but she is afraid to let go of the wall (the lovely wall, as she calls our pool's wall), she can swim OK in a floatie but only 2 inches away from the wall. OUr lifeguards tried to throw her in the middle of the pool which always resulted in a screaming match and more fear from Leah. Yesterday I could not help it and pulled her from my watch (she was holding on to my watch band) in the pool and she swam half the length of the pool, all the while screaming that she can't do it. Now she won't trust me too :)

Well... I am kind of disappointed by low counts even though they are not that bad and probably should not be expected to be normal yet. On Saturday Julia will have her usual acupuncture and I will ask Tuan to work on that. Also on Monday she is scheduled for her weekly Reiki/cranio. Hopefully all of this plus swimming and other exercise will put Julia in a good shape this summer and allow her to start the recovery from her chemo.

Thanks so much for stopping by and for your notes in the guestbook. I thought being off treatment would be exciting but so far I like that it is boring and uneventful. Also the freedom of not having to take medicine every day is priceless, not to mention that now after 2 years, Julia can have food at any time of day, including dairy. She could not do it on treatment because her medicine needed to be taken before bed time on empty stomach.

Please stop by Clare's site and show your support - Clare is being prepared for a bone marrow transplant as I type this. This family could use all the positive vibes they could get!

Love
Lola

Wednesday, July 6, 2005 3:19 PM CDT

Hello everybody!

A very quick update. Julia is feeling great and her last day of treatment is TOMORROW!

Today she brought a story she wrote at camp (it is illustrated with her drawings but I am too lazy to scan).

Lucky Ducky

Pictures by: Julia
By: Julia

(I kept her spelling) - LF

Once upon a time
There was a little
Lucky Ducky named
Luck. I'm not calling Him a lucky
Ducky Just to Be
funny I am calling
a lucky Ducky becase
he was a realy lucky
Duck.
So, I am going to
tell you the story of

LUCKY QUACK!

Well Luck was a
very greaty DUCK.
His parents were
greaty and so were
His Brother and
2 sister.
And one day
....
Luck and his parents
sisters and brother
exploded becase of all their
greatines

Pow

The End

I hope you enjoyed it!

p.s. Thanks so much for stopping by, for leaving your wonderful encouraging notes and for supporting Julia and our family. I will continue updating especially because Julia will continue with her alternative treatments and she will get regular (very regular, as in every 4 weeks) check-ups and blood work starting next week.

Love
Lola

Monday, June 20, 2005 9:19 PM CDT

Well, Julia is done with steroids - big hooray. I let her throw away the remaining pills in the trash (she chose that over flushing them down the toilet, who knows why, kids on steroids are not very logical). I cannot believe it but it looks like Julia's treatment is winding down quite nicely. She is scheduled to finish her 2 year 2 month chemotherapy journey on July 7, which is 2 weeks and 3 days away! It sounds almost impossible that we are so close and it makes us happy and nervous at the same time.
Last week went pretty well but it seemed very long. The kids were home all week and Julia was eating constantly. It seems that steroids cause her to eat and gain more weight with each passing month. I hope that she will be able to lose the extra weight around her belly and face which is so characteristic of the steroid-induced weight gain. Most importantly I hope that we are entering a happy and healthy period of her childhood which will smoothly turn into happy and healthy adulthood for Julia. On Saturday our unpredictable Julia allowed Tuan to insert all needles that he needed to insert for her acupuncture treatment and he also showed me points for treating her ear infection (of which she shows no symptoms thankfully). Then today the girls went to their summer camp together. It was strange after having them home all week before. John saw Julia today for some Reiki and Cranio and again he felt that she was pretty balanced. I LOVE hearing that!
Basically we are continuing with the same dose of 6-mp (100 percent) and methotrexate (75 percent), 2 oral meds, until July 7. Please wish us uneventful finish of chemotherapy and that we put this behind us. On Friday I will take Julia to the clinic so that they can check her ear, again I hope it looks better as it should.
As for me, I got an A for my Anatomy and Physiology final after scoring 242/250 on my final exam. This grade is not that important as this class is just a prerequisite and anything above a C would mean credit, but it made my day today.

Finally, I have an important announcement. I urge you all to check out a unique charity group, Melonhead founded by Deb Leone who lost her teenage daughter to leukemia (you can read her story if you click the above link). Deb made it her mission to help children like Julia who are being treated for cancer and whose parents turn to alternative/complementary medicine. This charity is in dire need of donations and now you can donate online. In the past, Melonhead sent us money to pay for Julia's acupuncture treatments and a check to Tom and John of Whole Body Concepts who so graciously donated their time and resources to Julia (Reiki/cranio work, consultations, supplements) for the over two years now!
You can Donate Online to Melonhead Here - no amount is too small! The money will go directly to pay expenses for acupuncture, supplements and other alternative healing modalities for children like Julia.
You all know how much Julia benefitted from acupuncture, reiki and cranio therapy and nutritional support. So take a moment, check out Melonhead and spread the word.

Thanks so much for checking on us. Let us know you stopped by, we love your guestbook messages.

Love
Lola

Tuesday, June 14, 2005 9:03 AM CDT

Hello everyone,

Julia had her big appointment yesterday which included the spinal tap and IV Vincristine. We had an unusually long wait, but other than that, Julia handled the whole thing really well. She was very relaxed for the spinal and did not even get her usual Lidocaine (numbing) shot before the big needle went in. Thanks to the wait, her EMLA (the numbing cream) on her hands and back worked extremely well after being there for 3 hours. Today I just got her results - the spinal fluid is NORMAL (yeah!) but the counts wend down.

WBC 1.5K
ANC 670
HGB 9.8
Platelets 261K
Monos 9 percent

Julia's ear still looks infected so it is either because the antibiotics did not work or because it is a viral ear infection. She does not have any more pain or fever from that though so hopefully it will look better next week. If not, she will get another antibiotic.
Then we went to see John for Reiki and cranio and John felt that she is a good shape!

I will write more later because the girls are home and we even have Leah's friend over for a playdate and Julia's friend is coming in a few minutes. So I will be busy for a while. this week the girls have no school and the camp does not start until Monday.

Thanks for everyone's prayers and positive thoughts!

Love
Lola

Tuesday, June 7, 2005 8:53 PM CDT

Hello again,

Well, the good weather did not free Julia from the cold. I think that the fever she had last Sunday and the sniffles did not go away completely because this past Saturday (June 4), she started complaining about an ear ache. This went on through the whole weekend and finally she started running low grade fever on Sunday night/Monday morning. We went to the clinic yesterday and sure enough, her ear looked infected. She is now taking an oral antibiotic Zithromax for 5 days. Her fever is gone now and the ear does not hurt anymore, just sort of plugged up. At least, Julia is feeling good enough and not asking for Tylenol since yesterday. Her counts are OK, not great, but good enough to continue with the same dosage of her oral medications. Her monos are high which hopefully means that her bone marrow is working hard and trying to recover.

WBC 2.01K
HGB 10.2
HCT 31.7
Platelets 334K
Bands 45%
Segs 0
Monocytes 20%

Next week on Monday at 9:30 (June 13) Julia is going to have her spinal tap. This is supposed to be her last final tap and she will receive her last IV Vincristine and start her last 5 day steroid course. This is very exciting and nerve wrecking at the same time.
In other news, that I forgot to report right away, Julia lost two teeth (one on top and one on the bottom). Her smily looks pretty funny and cute. The tiny adult teeth are trying to poke through :)
Today Julia had a NICE Reiki session with John and was unusually cooperative. She jumped on the table right away and stayed put and let John finish, except she kept talking to him the entire time! John felt that Julia is in pretty good shape which was great to hear. Tom gave me some Chlorella supplements for Leah who thankfully learned to swallow pills. They should help her to build up some minerals including iron - her blood tests at her 4 year old checkup showed that she has iron deficiency. I wish Julia could swallow pills like Leah!
At the clinic yesterday we met Clare and her mom, Karen. I was happy to chat with them, but it made me very sad to see Clare swollen from steroids and wearing a bandana. This is so wrong and I was depressed after seeing them. Please stop by Clare's site and leave some words of encouragement in her guestbook!

Well, that is it for now. Please pray/send Julia positive thoughts that her counts continue to improve and that her spinal on Monday is uneventful and spinal fluid is healthy and normal.

Love
Lola

Wednesday, June 1, 2005 10:37 PM CDT

Hello everyone,

Thanks for stopping by and checking on us. This will be short as it is getting late. Julia is doing well at the moment, nothing earth shattering (thankfully) is happening here. We had another (YES, another!) surprise viral (probably) comeback this weekend when Julia all of a sudden started sniffling and running high fever and complaining that the side of her head hurts. I hate these fevers!!!! This was on Sunday, May 29. I even called the oncologist on call because I thought that she could possibly have a sinus infection which would warrant antibiotics. Imagine my surprise when the doctor on call told me NOT to go the ER. It was the first time! His reasoning was logical and he basically said that Julia is obviously fighting some kind of a cold and that even if she does have a sinus infection, it might clear up by itself. I was stunned! I mean that I knew that but to hear that from a hematology/oncology fellow on call? He told me to make sure that she blows her nose well and to give her Tylenol. Sure enough, Julia who is our queen of 3 hour fevers, felt OK in a matter of hours and seems OK now (with a VERY MINOR sniffling).
We are continuing with her oral meds as before, 100 percent dose of 6-mp and 75 percept of methotrexate. The acupuncture sessions are sometimes difficult with Julia, but this time despite just getting off steroids, Julia allowed Tuan to stick needles into her, but only on her back. So he did half needles (on the back) and half acupressure technique (on the front). Our next clinic visit will be around June 13 when Julia will have her IV Vincristine, check-up and a spinal tap! Please keep her in your thoughts and prayers that her spinal fluid is clear and healthy and that her counts are nice and stable!
In other news - the pool is now open and the girls had a couple of swimming sessions despite the miserable weather. Our "old" lifeguards from last year are back, we just LOVE them (Tracy and Laura).
I am cramming for my A&P final on Friday, it is a BIG final as this has been a 6 credit class and my head is overflowing with all the information. Any ideas on how to stretch the brain before the exam? Oh well! It is fun anyway.

Thanks for stopping by and thanks for your guestbook entries!
Love
Lola

Monday, May 23, 2005 4:33 PM CDT

Julia had her 4 week appointment today which thankfully was as uneventful as could be. Her counts are pretty good, for her, considering that she has a small cough and had a stomach bug recently.

WBC 2.48K
HGB 10.5
HCT 33.5
Platelets 236K
ANC 1170

So she will probably stay on 100 percent dose of 6-mp and 75 percent of methotrexate as it seems to be the cut-off her. Any more methotrexate and her counts crash. Julia also received her usual IV Vincristine injection and started the 5 day steroids pulse (gearing up already).

Last week we let her go to a 2 day outdoor camping trip. Despite cold weather and extremely cold weather and rain on the second day, she had tons of fun. And while we were nervous, it was strangely enjoyable to just spend time with Leah who rarely gets one on one with both of us. Julia loved the trip and was not a bit scared of sleeping in a tent with her friends!

Here is some sad and shocking that I want to share here. When Julia was just diganosed, we met a great family at the clinic. I felt close to them because they also had two girls, and Clare, the youngest daughter, was being treated for the same kind of leukemia as Julia. Clare is also just a few months younger than Julia, but was diagnosed earlier. Unfortunately Clare's leukemia returned after 16 months AFTER (!) she finished her treatment (same protocol as Julia). It was very hard news for us, I could not imagine going through treatment and being in remission for about 4 years just to have this beast come back! Please send Clare some prayers and positive thoughts. She just came back from the hospital this weekend.

Love
Lola

Monday, May 23, 2005 4:33 PM CDT

Julia had her 4 week appointment today which thankfully was as uneventful as could be. Her counts are pretty good, for her, considering that she has a small cough and had a stomach bug recently.

WBC 2.48K
HGB 10.5
HCT 33.5
Platelets 236K
ANC 1170

So she will probably stay on 100 percent dose of 6-mp and 75 percent of methotrexate as it seems to be the cut-off her. Any more methotrexate and her counts crash. Julia also received her usual IV Vincristine injection and started the 5 day steroids pulse (gearing up already).

Last week we let her go to a 2 day outdoor camping trip. Despite cold weather and extremely cold weather and rain on the second day, she had tons of fun. And while we were nervous, it was strangely enjoyable to just spend time with Leah who rarely gets one on one with both of us. Julia loved the trip and was not a bit scared of sleeping in a tent with her friends!

Here is some sad and shocking that I want to share here. When Julia was first diganosed, we met a great family at the clinic. I felt close to them because they also had two girls, and Clare, the youngest daughter, was being treated for the same kind of leukemia as Julia. Clare is also just a few months younger than Julia, but was diagnosed earlier. Unfortunately Clare's leukemia returned after 16 months AFTER (!) she finished her treatment (same protocol as Julia). It was very hard news for us, I could not imagine going through treatment and being in remission for about 4 years just to have this beast come back! Please send Clare some prayers and positive thoughts. She just came back from the hospital this weekend.

Love
Lola

Thursday, May 12, 2005 10:43 AM CDT

Hello again,

Well, since I updated the pictures, I might as well update here as well. Julia seems to be doing OK, after a bout of something like a stomach virus she had over the weekend that of crouse spanned the mothers day and the anniversary of her diagnosis. It is becoming an unwelcome tradition for Julia to be sick on mother's day. We spend 2003 and 2004 mother's days at the hospital, so this Sunday I was determined not to go there even though Julia spiked fevers. The virus ended (I hope) as quickly as it started. It was funny how it happened. We were at the girls' Spring Festival on Friday night and suddenly Julia started screaming that her tooth hurts which never happened before. Just a minute before that she was running around and enjoying the moon bounce, face painting, etc. In fact, she had a bright blue batterfly painted all over her face when she started complaining. We ran home and by the time we got there, Julia was shivering like crazy, even after a warm bath. Then she was throwing up. I knew that she had a virus, but it happened so quickly and it came out from nowhere. This was May 6. On Saturday Julia had an acupuncture treatment and felt better and by Sunday night she stopped throwing up.
Next week her class is going on a camping trip. I told Julia that if she has even the slightest sniffles or if it is raining, she won't be going. I hope that she gets to go though, it sounds like much fun even if it is making me nervous (not Danik!).
So we'll go back to the clinic for counts next week to find out if they are good enough to continue chemo at this level and to see if Julia can swim in the lake. If her counts are too low (hope not!), she won't be allowed in the lake because there are too many microorganisms that may be dangerous.
Julia's diagnosis anniversary was May 8th. I cannot believe we have been dealing with this for over 2 years now! Sometimes it feels like a bad dream. Julia has come a long way!
Well....that is it for now. Please continue to send Julia positive thoughts and prayers.

Love
Lola

Wednesday, May 4, 2005 1:25 PM CDT

This is just a quick update as I have to run soon! Julia was in the clinic today to have her counts done and they are good!

WBC 3.79K
HGB 11.6
ANC 1330
Platelets 325K
Monos 13R>
So her 6-mp will be increased to 100nd she will stay on 75f methotrexate until her next clinic visit at least.
Her cold seems be going away with only some morning cough remaining. Overall she is feeling pretty good!

The other news is that we have a new family member. Presenting Ruby Rose Cherry Delilah Madoodle, our new cockatiel and it is a girl! (Julia and Leah named her, can you tell?) The girls had been waiting patiently for her to grow a little bigger and learn to eat solid food before we could bring her home. She is an awesome pet, very very friendly and gentle and causes no trouble at all. When we are not playing with her, she just sits quietly in her cage and pecks at her food once in a while. She is gray with orange/pink cheecks, some white spots on the wings and black/white/yellow stripes on her tail. She is a cutie and Leah is absolutely all over her. I will post pictures soon (hopefully).

Julia is going on her camping trip, we decided. However, if her counts are not that good, she won't be allowed to into the lake to swim. So we will go back for counts again in 2 weeks, keeping fingers crossed that they remain nice and stable.

THanks for checking on us and please sign the guestbook - we'd love to know you were here!

Love
Lola

Friday, April 22, 2005 8:14 PM CDT

Hello again,

Julia had her monthly clinic visit on Wednesday April 20th. Everything went well (IV Vincristine, checkup and blood draw) and we were out of there in record time. I think the whole visit was about 45 minutes - I just love our outpatient clinic for their efficiency! Julia's counts are really wacky considering that she was neutropenic just a few weeks ago.

WBC 8.2K
ANC 6000
Platelets 252K
HCT 33.9
HGB 10.5

As soon as I got her counts on Wednesday afternoon and before I had a chance to freak out over high WBC and ANC, Julia started a new round of sniffles (yes, another one and I stopped counting our colds, yes, Leah has sniffles too). I guess that explains the high white cell count as Julia was probably just gearing off to fight the cold off when her labs were done. Luckily her other counts are pretty good too, so her chemotherapy was increased to 75 percent for the next two weeks. ANd when I say 75 percent, it only applies to 6-mp and methotrexate. She still got her full dose of Vincristine (by IV) and has been getting the full dose of steroids. Today is day 3 of steroids and need I say more? Actually Julia seems to be doing somewhat OK this time on steroids, having only a couple of mood swings/day and some moderate spaghetti with tomato sauce from Whole Foods cravings.
Here is a dilemma that I am facing next month. Julia's class is going on an overnight camping field trip! Of course, she is dying to go there. On the other hand, I have a hard time letting her go. I cannot imagine how she will be able to stay away from mommy for two whole days and spend the night in a tent in the middle of the forrest (well, practically a forrest, although technically it is a state park) with wild animals (who live in the forrest - lions and tigers and bears, oh my, right?) and who knows what else there. I think that my feelings are probably irrational. I could chaperone but then there is a whole other deal because then I have to ask Danik to get Leah from school on the firstday. And he may not be able to be off work so early and then he'd have to make sure that the next day she goes to school wearing symmetrical socks and does not forget her lunch box. Not to mention that he would have to pack it. And not to mention that I have my Anatomy & Phys. class on Friday that I cannot miss because it would be just before the final exam. Anyway, Danik just wants Julia to go by herself (well and 21 other children and 7 chaperones), and I am kind of tempted to agree with him because it would be so "convenient", but I know I would be a nervous wreck until they come back safely. Any ideas on how to cope with "mom's anxiety"? Am I nuts?

So that is pretty much the scope of the recent events. In addition, Julia's friend with whom Julia had a playdate last week and went to a musical theater class yesterday seems to have chicken pox. Well, according to Julia's doctors, yesterday's contact is not considered an exposure to chicken pox because it was not long enough but last week's playdate was. For those who don't know, chicken pox is considered very dangerous for immuno-suppressed people because it can spread to major organs when the immune system is not functioning optimally. Unfortunately it is too late for Julia to get an immune booster for last week's exposure if the girl did indeed have chicken pox at the time (she already had the characteristic rash then but her mom did not take her to the doctor yet). And the incubation period for chicken pox is 21 days so I am keeping my fingers crossed for the next 2 weeks that Julia will remain healthy.

Please continue to keep Julia in your prayers and send her positive thoughts.
And thanks for stopping by - don't forget to sign the guestbook!
Love
Lola

Monday, April 12, 2005

Hello again,
Just a short update with Julia's counts - they came up nicely.

WBC 3.6K
HCT 34.9
HGB 11.2
ANC 1510
Platelets 389K

So back on chemo she goes.
On a funny note - today we went to a hypnotherapist. Amazingly Julia was completely relaxed especially after he showed her a few magic tricks. Then I had to leave the room but I could hear everything. He put her into a deep relaxation state and then told her a long fairy tale about a rainbow princess. I did not hear the end of the story because I started chatting to his wife. I have a tape of the whole thing to which I will listen later. I asked him though if he was able to insert any suggestions about taking medicine and he said yes and that Julia answered agreeably. Well, on the way home, I got a phone call from the clinic with the counts, so I had a chance to test Julia immediately by asking her whether she would take her medicine. "Yes," - was her reply, - "but I am not swallowing them, EVER!" Urggghhh.... and this is a dreaded methotrexate day so we'll see how she will take it.

Wish us luck,
Lola
----------------
Monday, April 11, 2005 9:08 PM CDT
Hello all,

Sorry for a long break in writing. We had another bout of illness in the house that started the night before April 1st. First Leah came down with a cold and a very high fever. Thankfully she recovered quickly in Leah's fashion but next it was Julia's turn. Julia had a really bad cold that lasted 4 or 5 days last week, spiking fevers and coughing. Her counts were low a week before the cold, so I was sort of panicking about taking her to the hospital. Thankfully Julia felt a lot better after seeing Tuan and getting her acupuncture on Tuesday last week. The weather was turning really nice so I was hoping that all of that illness is behind us but Danik caught it! He has been sick since last Thursday with fever and cough and still did not go to work today. This is becoming really tiring but on the other hand, I should not be complaining. Julia looks pretty happy and healthy as she has been off steroids and all her other chemo due to low counts 2 weeks ago. I hope that her counts are up which we will find out tomorrow after her blood test.
On a happy note, Julia became quite a "prolific" reader and now devours 200 page books in a matter of hours. When she was on a break, she managed to read "big kids" books such as "Witches", "Charlie and the Chocolate Factory" (can you tell that Roald Dahl is her favorite author at the moment), "Because of Winn-Dixie." She also loves to solve math problems in her head.
Well, enough of me bragging. Tomorrow we should have an interesting day. After school I am taking Julia to see a hypnotherapist. He has experience working with children. I want him to help Julia overcome her feelings of anxiety and "tired of it all" attitude when it comes to many medical issues such as medical procedures, blood tests, pill swallowing, getting acupuncture and Reiki without a fight. I understand that she is tired, tired, tired of all of that (aren't we all?), but if she has a positive attitude about it, it will be a lot easier for everyone involved. Especially me, ha ha (I am being slightly selfish here). Julia does not even want to see another "therapist", but I told her that he would show her some magic tricks (that is the woman who helped me schedule my appointment told me on the phone). As far as I am concerned, there will be a struggle just to make her step into that poor guy's office. Oh well.... But for a kid who has that many medical things going on, Julia has a pretty sunny disposition (not on steroids though). Just last week, she had 2 acupuncture session, Reiki this afternoon (thanks, John), blood test tomorrow morning, hypnotheapist tomorrow, acupuncture on Saturday, a checkup and chemo by IV scheduled for next Wednesday (not to mention starting a new steroid pulse as well) and that does not include taking medication and getting moxa (sort of an acupressure technique that I sneak in at home). Whew....
My midterm results are not in yet, and the more time goes by, the more I think that I probably failed it. I really did not study as much as I needed because the kids were on the school break. Leah got sick the night before the exam, so I was stressed out too. The only good thing is that I had good grades on all of my quizzes and they have half the weight for the final grade.

Thanks for stopping by, I will post Julia's counts as soon as I get them.
p.s. Please continue to pray for Julia and send her positive thoughts - we are sure that they are helping her.
Love
Lola

Saturday, April 2, 2005 9:18 AM CST

Hello again,

Julia has had a pretty good spring break but caught a cold yesterday, right after Leah. So we are back to square one as far as colds go. Thankfully the weather was nice (a couple of times this week anyway) and allowed us to spend a lot time outside. We also went to the indoor swimming pool twice and Julia enjoyed swimming there which she did not have a chance to do since last summer! However, I think the swimming pool is the reason the girls caught their colds (either it was too cold to come out or they caught somebody's virus in there).
Julia felt pretty good, her appetite came back with the vengeance after the course of steroids and her energy level was good. Yesterday she went bawling with Mark and Cheryl and her first strike!
But her counts dropped even lower even though she has been off oral chemo since last Monday (for about 12 days as of Friday, yesterday).

WBC 1.25K
Platelets 141K
HGB 8.7 (she looks really pale)
ANC 410
Monocytes 7%

The oncologist on call said the lab even looked at the smear to ensure there were no abnormal cells and thankfully there were not any. I am sort of worried because I hate to see her counts dropping like that off-chemo. Today we are going to have acupuncture, but Tuan is not there, somebody else is going to treat. Hopefully her counts will recover soon. Despite the cold, Julia is feeling pretty good and making bead necklaces with Leah as I am typing this.

My midterm was very intense - covering bones, muscles and nerves, I have no idea if I passed. We had 250 questions and 3 hours to answer them. OUr whole class was exhausted after the test and we even had a guest speaker who graduated in December and is already a practicing acupuncturist. She gave a pep talk on how important this class is and that we need to stay motivated despite feeling kind of blah about the amount of material.

Thanks for your notes in the guestbook and thanks for checking on us,

Lola
p.s. New pictures are coming soon, I promise! Danik sold my digital camera on ebay after he bought his own digital monstrosity so now he is in charge of making pictures because I don't know how to use his camera. So I will bug him today!

Tuesday, March 22, 2005 1:19 PM CST

Hello again,

Thanks again for your positive thoughts/prayers. Julia's spinal came back CLEAR - yeah! Her visit yesterday was very fast and smooth, we were out of there in less than two hours and that is inluding a spinal tap, check-up, IV Vincristine and blood draw!

Unfortunately Julia's counts dropped kind of low.

WBC 1.3K
Platelets 160K
ANC 485
HGB 9.5
Monos 8

Our NP thinks it is due to her cold that lasted quite a while and seems to be gone now. Julia is feeling OK but looks pale and tired. I also took her to John for Reiki/cranio yesterday. She was in a pretty good mood after that and went to shool today as if nothing happened. Of course, now she is back on steroids, so I am holding on to my seats waiting for her crankiness and food cravings to kick in.

Julia is off all oral chemotherapy now until her ANC > 1000. That is what I am hoping for by next week. Until then I will be giving her moxa treatments at home and take her to Tuan for acupuncture on Saturday. Hopefully she will feel good despite low counts and steroids and get to enjoy the spring break starting this Friday.

Thanks for checking on us!
Love
Lola

Thursday, March 17, 2005 1:13 PM CST

Hello again,

The sun came out today and it is just a tiny bit warmer so I hope that the spring weather will bring the end to the cold and cough. Julia seems to be feeling way better and her appetite and energy are returning. The cough is still there but it's much better too. She is still on the oral antibiotic (Cefzil) which she hates even though it does not taste that bad. I think this is the first week in a few months that she has gone to school and did not have to miss any days.
As you know life is not fair, so now that she seems to be back to normal (or almost), she will have to have a spinal tap on Monday (3/21), spinal (IT) Methotrexate, IV Vincristine and steroids. Please pray/send good thoughts/keep fingers crossed that Julia's Monday visit goes smoothly and that her spinal fluid is clear, healthy and normal.
Wall Street published an article recently about the national shortage of injectable methotrexate. This is a very important drug for many childhood cancers. Thankfully our clinic seems to have stockpiled it so there will be enough for Julia's spinal injection, but I just can't imagine dealing with this kind of problem on top of everything else.
On monday (this week) I took Julia to John for Reiki/cranio and she will have another appointment after her spinal. It is interesting that when she truly needs the work (i.e. has a cold, not feeling well), there is no problem to get her on the table and stay still for a few minutes. However, when she is feeling healthy and energetic, she will use all her power to argue and run around and in general resist this type of work as much as she can.
After last week's ER adventure, Julia became really anrgy which is totally out of character for her. She was irritable and even screamed and bit me, my mom, and Leah on several occasions. When she is allowed to live her life as any 7 year old kid, she becomes melow and happy, which is her normal state, so it is very difficult to watch her feeling so out of control that she needs to resort to violence to express her frustration.
On a brighter side (and I am forgetting whether I wrote about it here or not), Believe in Tomorrow organization offered a free stay in Ocean City in August. We will be staying right on the beach, is not it cool? The girls love the ocean, so I hope we get to go as planned.

Thanks again for checking on us!

Love
Lola

Friday, March 11, 2005 4:03 PM CST

Hello again,

Yesterday we had another really tiring day. Julia woke up with fever and really deep and juicy cough. Unfortunately Tuan was off yesterday so I could not take her for acupuncture. So after giving her some moxa treatment at home, we headed to the ER. I was sure that she developed pneumonia or at least bronchitis and/or an ear infection (she complained of an ear ache). Strangely enough, X-ray showed her lungs to be clear and the ER doctor said that her ear looks just a tiny bit red but not like it's a raging ear infection. However, even though they did not want to give her any antibiotis at all (counts were good), I insisted. I just knew that the ear ache and the fever and plus the fact that she had 13 bands (type of neutrophil usually elevated in bacterial infection) all pointed out to something bacterial brewing. The funny part was that the nurse brough Julia amoxicillin in a cup despite the fact that Julia wore a red allergy bracelet indicating that she is allergic to amoxicillin!
For some reason, Julia was really ticked off about the usual IV placement and especially when they tried to get a sample from her nose (she is negative for flu and RSV). We were so tired after spending a day there and thankfully today Julia feels somewhat better, no fever and the earache is gone. Getting amoxicillin into her is a real challenge.

Another sad thing is that she had to miss the dress rehearsal and the shool play "Charlie and the Chocolate Factory" that her class presented yesterday. They rehearsed it for such a long time and she had been looking forward to playing an Oompa Loompa.

The previous cold never went away. Can this end already?

Here are Julia's counts from yesterday:
WBC 2.2K
RBC 4.49
HGB 12.6 (nice surprise)
HCT 37.4 (another nice surprise)
Platelets 232K
ANC 1500
Monos 8
Bands 13

Please send Julia some get better soon vibes and prayers that she gets to be healthy soon!
Love
Lola

Monday, March 7, 2005 2:38 PM CST

Hello!
First of all, I would like to thank everyone who came to Julia’s party on Saturday! Julia was delighted to have a party at Build-A-Bear, even though (5 bears later) this place is starting to feel old to everyone. She had a really bad cold that started on Wednesday and on Thursday she still had high fever. Then she felt better on Friday and even went to school. I learned that her friend Evelyn prayed for Julia to not miss any more school which I thought was very sweet. Julia stayed happy and well and then as soon as her party was over she went back to the cranky and sickly mode. I guess her cold was not really over but she willed herself to get over it in time for her party, seriously. She spent most of the weekend laying around and doing nothing. Today she woke up with some monstrous cough and no energy and no appetite. This is always scary so I even called the clinic where our NP said that a really bad cold is going around which makes even entirely healthy kids miss a lot of school and have symptoms for a long time. That made me feel a little better, especially when she told me that Julia’s symptoms were not as severe as other kids’ are. Also since Julia missed school on Thursday I took her in for an acupuncture session after which she actually felt a lot better. But today’s cough is pretty bad. Julia even threw up because she was coughing so hard. Thankfully she is not an emetophobic like me so she did not even get phased out by that 
I brought her to John for Reiki/Cranio in the early afternoon and she started feeling better right in the middle of the session! John put some essential oil on her chest to help the congestion. It was an immediate relief, by the time we got home she was ravenous (after refusing to eat almost anything the whole day). I think I am going to try to get the girls outside for a walk as the weather is fabulous today. By the way, Leah caught Julia’s cold but seems to be 100% better today!
So as you can see, we are still fighting those damn colds. I am soooo ready for a break from that.
By the way, we have pictures from Julia’s party but they have not been formatted yet, so I will update the pictures soon, please keep checking.
Love
Lola

Saturday, March 5, 2005 6:30 AM CST

HAPPY 7th BIRTHDAY, JULIA!

Pictures and updates to follow....

Lola

Wednesday, March 2, 2005 11:55 AM CST

Update March 2, later.
Thankfully Julia's ANC is 2000 so she does not need IV antibiotics. We just have to watch her carefully until she gets better. Her fever came up in the afternoon to 38.9C under arm, but went down with Tylenol to 37.1C and then to 36.1C after her bath. I just so hope that she gets better soon, especially in time for her birthday!
Lola
-------
March 2 morning update.
Hello again,

I spoke too soon. The minute I finished last entry, I came down with yet ANOTHER cold (lost count already). Julia came down with a little cough yesterday and today she had a full-blown fever going. We went to the clinic and our NP thinks it's just a viral infection, but we don't know her counts yet. Julia's fever went to almost 102F (underarm) and stayed up even with Tylenol, so she is not feeling too happy. If her counts are decent, we just have to watch her but if her ANC is too low, she will need to get IV antibiotics and maybe even get admitted. Please pray/send good thoughts that Julia's fever goes down, that her counts are good and that she gets over her cold in time to celebrate her 7th birthday!

Thanks for stopping by and I will update when I know her counts.
p.s. Danik got a cold now too and Leah seems to be fine as of this morning.
Love
Lola

Wednesday, February 23, 2005 9:34 AM CST

Hello again,

(in whisper) I think we got over the colds.... Except that Julia caught something, probably viral, and was throwing up all day on Saturday. Apparently a stomach virus is going around but no one else in our family (amazing! fingers crossed) got it. Luckily Julia had her acupuncture appointment on Saturday and I think it helped her get over that virus very quickly (read - it was gone in about 14 hours).
We had a long weekend, and the girls, especially Julia, had a very special day on Monday because Mark and Cheryl took them out bowling and out for pizza. I have an earful about bowling now!
Yesterday Julia had her monthly clinic visit that went very well. We were out of there in less than one hour! Gotta love our clinic for that. According to Dr.A, Julia looked fantastic and her counts were finally in the range they are supposed to be in.

WBC 2.17K
HGB 10.5
HCT 32.4
Platelets 270K
ANC 1450
Monocytes 7

Our NP was leaning towards increasing Julia's methotrexate to the full dose (now she is at 85 percent, so we are splitting hairs here) and her onc tends to be more cautious about that. Dr. A thinks that Julia would be better off taking a little less methotrexate versus taking her full dose and bottoming her ANC again which will result in her being off chemo entirely. I will call the clinic today to find out what it will actually be.
Julia also received her usual IV Vincristine and started on the (FUN!) steroids yesterday.
OK - the clinic just called, Julia will be on 100 percent dose of both of her oral meds -6-mp and methotrexate - which means that she will be taking 7 methotrexate pills each Wednesday and 1.5 6-mp pill/day for 3 days and 1 6-mp pill for 4 days (repeat every week). I hope that her counts continue to be stable. We already have an appointment for March 21st for her next spinal tap (9 a.m.).

OK, 'nuff of that! The good news is that Julia will have her birthday NEXT SATURDAY, MARCH 5th! She is turning SEVEN, Oh my god, how did this happen? I can't believe that she is so grownup already! She wanted her b-day at Build a bear, so that is what we are doing with a dozen of her CLOSEST friends :) The on Sunday we will celebrate with our parents (her grandparents) especially because Julia's grandma Valya also has a birthday on March 5th and turning 32 ;).
On March 3rd, Julia's class will be presenting Charlie and the Chocolate Factory and that is the only thing that she is talking about lately (she is an Oompa Loompa).

Tomorrow we are supposed to get some snow here - two to four inches, so it looks like I will be stuck here with the girls and Julia on steroids - LOVELY. I think steroids is the most hated medicine in the world, really.

Leah cracked me up yesterday. We were in the store killing time before picking up Julia from her chess club. As some of you know, I am taking an Anatomy and Physiology class right now. Leah (reminder, she is 4) started talking about skeleton to me which I thought was prompted by my open textbooks lying around the house. But then she started pointing her varius body parts and naming them, such as cranium, spine, patella, phalanges. At first, I thought that she was some kind of mind-reading child-prodigy. But then I had to laugh out loud in the store because Leah kept talking how without a skeleton our bodies would jiggle and be wobbly and slimy. Apparently their teacher brought a skeleton poster to their class and taught these little 3,4,5 year old kids all the major bones. I told Leah that she and I are studying the same subject. This is actually a great idea because memorizing bones is very hard at my old age of 34. The 4 year old just needs to hear the names ones and boom, she knows them for the rest of her life!

Thanks for stopping by and leaving your notes. I promise to put new pictures on the site as these were around forever.

Love
Lola

Saturday, February 12, 2005 9:15 PM CST

Hello everyone,

I have been meaning to update the journal since Monday but kept getting side-tracked... Julia is doing OK, battling a cold, yes, again, another cold. At this point, she is the only one sick in the house after we all cought a cold continously since mid-January. I think it was the worst month ever as catching colds to the point of me losing counts of how many colds I got. I think that Julia only had two colds though with this one being worse than the previous one. It seems that she developed a strange pattern of getting a cold the day after her counts are done. As a result her counts, especially her WBC and ANC look really nice and high but this is only thanks to her body fighting a cold!

So the counts, as of Monday, Feb 7 looked like that

WBC 4.5K
HGB 10.5
HCT 32
Platelets 322K
ANC 3260

Julia (thankfully) did not get a fever and I keep my fingers crossed that she will recover soon. Her nose was running, she still keeps coughing at night, but overall she seems OK. Her methotrexate was increased to 85 percent (6 pills) and her 6-mp remains at 100 percent. We are going back to the clinic after the Presidents day on 2/22 for her monthly check-up and IV Vincristine.
Today Julia had her acupuncture appointment and we met a very frail lady there in the waiting room. That lady noticed Julia's Live Strong bracelet and told us that she has one too because she has cancer. Apparently Julia met good friends with that woman during our earlier visits (while I was still zonked out on an acupuncture table and she was already done hanging out with Masha in the waiting room area) because that woman knew about Julia's dx. It was weird to see how fragile and thin that woman looked, I almost felt guilty because Julia seemed so normal and healthy next to her. The woman has been on chemotherapy for 4 years already. Of course, Julia has been on chemo for almost two years already but her appearance is so normal now (hair grew back wildly, good color - most of the time anyway, high energy level) that she is getting chemo. It is strange and sometimes I wake up in the middle of the night because it hits me that it is happening for real.
So, except for the cold, I really am happy with the way Julia is doing right now. I just received her school report and she seems to excell in everything, especially in reading, math and presentations in front of this class. This kid does not have an ounce of shyness, seriously!
On Monday we are supposed to see Tom and John for Reiki session and I hope that Julia won't pull that thing again when she refuses to get on the table (and the guys don't force her). I might start looking for some kind of psychotherapy for her (seriously) that will help her overcome her fear/disgust of taking medicine, getting acupuncture, something that will help see it in a different light instead of being something we have to force her into. Today she was an angel though (well, almost) at the acupuncturist because she did get her week off as promised with no acupuncture last Saturday. We are all sick and tired of taking medicine, going to medical appointments, interventions, and etc. etc. (while thankful for all of that being there to help her, of course).
OK, it must be some day of rambling for me. I will stop here and thank you everyone for stopping by and leaving notes.
If you want to drop Julia an e-mail, her address is julia_powergirl@yahoo.com! She loves getting mail and will write you back (eventully anyway).

Love
Lola

Tuesday, January 25, 2005 8:58 PM CST

Hello again,

Well,I spoke too soon - we got another cold, and again this new one started as soon as we got over the flu. As usual, Danik is the only healthy one here but Leah, Julia and I promptly got it together,almost at the same time. I can't even tell who passed it to whom. For now it is just sniffles and scratchy throat, not nearly as bad as the flu!!!

Julia had her clinic appointment yesterday. It went pretty smoothly and the oncologist declared her in great shape. I had to laugh at that because I knew at that point Julia was coming down with sniffles - she looked really pale with dark circles under her eyes. And sure enough she started sniffling last night. I keep my fingers crossed that she stays fever-free.

It is weird because on saturday we saw Tuan for Julia's regular acupuncture and he saw that her chi was really low. Her blood seemed low too.

Her counts are great but probably because we caught them at the beginning of the viral infection (91 percent neutrophils!!!) and they will probably go downhill from now. I am glad though that despite the chemo, Julia is able to mount this kind of response. In fact, she seems to feel better than me and hopefully would get over this cold faster (which would be great!)

WBC 4K
ANC 3600
HGB 10.7
HCT 37 (I think)
Platelets 240K
Monos 2 (not much)

So based on these counts, her 6-mp was raised to 100 percent and MTX will stay at 75 percent for the next couple of weeks.

Yesterday Julia got her usual IV Vincristine and started steroids too. I think they are kicking in already. At times like these, I am grateful that Julia has a naturally sunny disposition. She does turn into a monster but I guess it could be worse for those steroid days.

Thanks again for checking up on us!

Love
Lola

Wednesday, January 19, 2005 9:12 AM CST

Hello everyone,

We survived the flu - YEAH! Somehow Julia did not get it (OK, keeping fingers crossed just in case it's still going around) and my mom and Alik got it pretty bad - high fever for many days already.
Julia's counts last week on 1/12 were good to increase her chemo to 75 percent.

WBC 4.24
HGB 10.5
ANC 2400
Platelets 305K

So the girls are in school now and life seems to be back to normal. Except it started snowing this morning and I am afraid the school is going to call and ask to pick them up, LOL. I knew this would not last :)
Julia will have her next clinic appointment on Monday Jan. 24 and will get back on steroids. This cycle is only 3 weeks long instead of four because our last cycle was longer, 5 weeks so we have to get back on schedule. Julia seems to be feeling pretty good and has a lot of energy. Sometimes it is hard to believe that she is on chemotherapy, but she definitely has her moments. Sometimes she acts out or gets extremely moody or cranky. Thankfully this happens mostly when she is taking the steroids.

Julia continues to have her acupuncture and Reiki/cranio therapy sessions which became a sort of a routine by now. She does wear out her therapists when we go - it takes a while to get her to lie on the table and enjoy the treatment. Whenever she has one of those appointments, Julia has to run around the table, jump on and off, whine that she does not need it, and scream at the top of her lungs. The more we go, the less cooperative she gets. I think if this continues, we may need to take a break for a couple of weeks at least.

Well, thanks for stopping by and thanks for your notes. To everyone who I did not e-mail back - I am sorry - with me and Leah being sick and Danik away last week, I did not have much time.

Love
Lola

Sunday, January 9, 2005 7:19 PM CST

Hello again,

Julia finished her steroid week on Friday and I must say that it was a tough one for everyone. She was extra moody right in the middle of the week mostly because she was tired as well and maybe because she just a spinal tap on Monday. But she seems to be already back to her normal mood (almost anyway) today. The bad part is that both I and Leah caught something viral and nasty, running high fever and having body aches. It feels like flu and I pray that Julia will remain healthy (miracles happen right?).
Please please send Julia some prayers/positive thoughts that she will remain healthy and to Leah for quick healing. Also to me that I get better quick. Being sick is really horrible!!!

Today we had an interesting visit to a Russian immersion class. The girls refuse to speak Russian most of the time despite the fact that Russian had been their primary language since they were born. So my mom found this place where the kids go for 2.5 hours on Sunday and learn to speak, read, write and do math in Russian. The teacher was very impressed with the girls especially Julia because she seemed very quick at the tasks and even remembered all the Russian alphabet and how to write her name in Russian. I hope the girls will continue to like this school because otherwise they might switch to English completely.

On Wednesday Julia will have her counts done to see if her ANC is going up. That would be nice to see although steroids probably inflated her WBC and ANC counts. Overall the year started pretty stressfully and we can use a break of peace and good health right now :)

Love
Lola

Monday, January 3, 2005 12:46 AM CST

Hello everyone,

Today Julia had a big clinic visit during which she had a checkup, IV Vincristine and a spinal methotrexate. It went very smoothly, even a spinal did not bother her much :) YEAH and the best news is that her spinal fluid is clear, hoorah!

On the other hands, her ANC is lower than it should be (again).

WBC 1.28K
ANC 510
HGB 10.9
HCT 33.2
Platelets 248K
Monos 13 percent

Usually if ANC is below 1000, she should not be on oral chemo, but Julia's NP told us to continue at lowered dose (50 percent). Mostly because her monos are a little high which indicates that bone marrow is not really suppressed. Julia seems to be doing fine after a spinal but decided to skip school and hang out with me for a change. So we went to a mall (build a bear) and to a park. Today she will also have a Reiki/cranio work with John which will hopefully help her to feel good this week (steroids are starting). Also we have to go back in 3 weeks instead of 4 because this time we delayed our 4-weekly appointment by 1 week (holidays).

Thanks so much for checking on Julia, leaving messages and most importantly thinking of her and praying/sending positive thoughts.

Love
Lola

Wednesday, December 29, 2004 9:20 PM CST

Hello again,

First of all, thanks so much for so many warm notes in Julia's guestbook. I am so behind on my e-mails to everyone though not intentionally. The kids are still enjoying time off from school and I am sort of enjoying being with them. The weather has not been very nice here and we spent a few days indoors but thankfully the girls had their share of fun too. Julia has been feeling pretty good (knocking on wood) and having lots of energy. Her headaches did not come back which is a great thing! YEAH!
We don't know her counts because she is enjoying a month of NO CLINIC VISITS. I keep my fingers crossed and pray that she will continue to feel as good as she is feeling now. This week is sort of a "field trip" week for us. On Monday we saw Charlotte's Web in the children's theater, yesterday we went to the Baltimore Acquarium with Masha (Julia and Leah's aunt which was great!) If you never saw a cow fish before, you have to go to the Acquarium just to see it. It is the most bizzare creature I have ever seen. Today I took the girls to the Rio to feed the geese but they were all gone, instead we saw a bunch of seagulls walking on icy pond. And I had a flat tire, thankfully Danik came to my rescue and changed it! (can you tell that I am impressed?I could not do it even for a million dollars).

That's pretty much it. In case I don't post until January - I wish everyone happy and healthy 2005! We are determined to make it a great year!

On January 3rd, Julia will have a clinic visit - a checkup, count check, IV Vincristine and spinal Methotrexate. PLEASE send positive thoughts and prayers that her spinal fluid is clear and healthy and that Julia's counts are good.

p.s. Some news about me - I was accepted into the Tai Sophia graduate acupuncture program sarting in the Fall of 2005! I am actually starting there in January because I need to take a 6 credit Anatomy and Physiology course (prerequisite). This is a very exciting time for me, except for the worries about our future. This program is about 3 years long (I say about because the last half of it is clinical practice and one has to practice a certain number of hours in the student clinic before being able to graduate. But once I graduate, I will become a licensed acupuncturist in Maryland!)
----
Please continue to pray and send healing thoughts to Julia. I think this is the best thing you can do to help.

Love
Lola

Tuesday, December 21, 2004 8:27 PM CST

Hello everyone,

Long time no see. I was pretty lazy with updating the journal. It was because we had some stressful time right after my previous update and I got sort of depressed about writing here. Nothing really bad happened thankfully. On December 8 Julia continued to have headaches. I called the clinic and the NP told me to immediately go to Childrens for a CT scan and possibly spinal tap. I don't have to tell you how freaked out it made me feel. However, after Julia was checked out by two different doctors, they decided to just let us go home without any additional tests. She looked absolutely great to them and strangely enough the headaches never came back since (fingers and toes are crossed). This was probably one of her "normal" getting off steroids headaches but somehow it became very concerning to the NP and the onc because it was a MORNING headaches. Apparently morning headaches are of organic nature, meaning that something is going on in the brain. However, in Julia's case it meant steroid withrawal (at least that is what the docs and I think).
After that Julia continues to feel really well. She is pretty active and her color is good. Her counts won't be done until January 3, 2005! That is considering we have UNeventful time until then and that is what I am really hoping for, remembering how awful it was the same time last year with Julia ending up in the hospital with fever and neutropenia.
The girls are on winter break which means lots of fun for me! In fact I was slightly nervous about entertaining them for two whole weeks but they are really a lot of fun - thankfully steroids wore off by now :)
Leah had a CBC done which was sort of a part of her annual checkup. I say sort of because usually they just test hemoglobin, but Leah is short for her age so they decided to check her thyroid and lead levels as well. Everything checked out normal except for slight anemia. Which is probably iron deficiency. Her HGB is 10.8 and her HCT is 32.6 which is kind of low but not too bad. Her other counts were OK, WBC 9.4K and Platelets 385K. It is hard to avoid thinking about the time when Julia first started having symptoms and her CBC was normal except for HGB which was almost exactly the same as Leah's (10.9). Well... I have to say though that Leah is a very picky eater and does not eat meat everyday. So my new mission is to try to get her to eat meat or greens. So far (since yesterday) she had a big juicy steak and I mixed some greens (supplement) into her orange juice which she did not even notice.
On Saturday Julia saw Tuan again for acupuncture finally (I say finally because he was away for two weeks) and yesterday she had her usual Reiki/cranio appointment with Tom and John. Both went really well except yesterday Julia was really tough on the guys, jumping all over the place and stayed on the table for maybe 10 minutes or less.

Thanks again for checking on us!

Love
Lola

Tuesday, December 7, 2004 8:09 AM CST

Hello again,

I think Julia has been feeling yucky long enough and should start feeling better. This is how I feel because as soon as she got over her pneumonia, she picked up a cold, then she was on steroids for 5 days last week (finished on Friday), and now she gets headaches and throwing up episodes. I think this is probably a combination of having a virus and getting off steroids (steroid withdrawal) but headaches are always worrisome to me. Please pray or send Julia some healing thoughts. Leah has also been sneezing and coughing a little, even running a small fever. This has been ENOUGH! Today Julia did get a small headache in the morning but after throwing up, she felt really good and wanted to go to school. I let her go because she missed yesterday and spent a whole day at home feeling pretty good (in between the vomitting). I really really keep my fingers crossed that she starts feeling better soon. Thankfully she does not have a fever, so we are weathering this at home without any doctor visits.

Yesterday Julia had a good cranio/Reiki session with John and she even admitted herself how much better she felt after the session. She also had acupuncture on Saturday. I don't know what else to do to help her with headaches. I tried giving her coffee (a good advise from another mom) but she did not like it. I gave her Tylenol but she threw it up.

I was really hoping that this would be a good month with no clinic visits so that Julia can forget about all that medical stuff for a while. We are not scheduled to go to the clinic until Jan. 3, 2005!

Well, thanks for stopping by and for your guestbook entries. Julia loves checking her website and reading them :)

p.s. On Saturday we visited the North Pole (Fantasy Flight organized by the United airlines for children with cancer). Julia and Leah both got to sit on Santa's and Mrs. Clause laps and they thoroughly enjoyed that and the party afterwords (and of course the presents). Leah said that we should just move to the North Pole.
I met another mom whose 6 year old son is battling ALL. They are also giving him AHCC supplements and feeding him all organic. It was really nice to meet like minded parents :)

Love
Lola

Tuesday, November 30, 2004 1:21 PM CST

Hello again,

Julia had her monthly appointment yesterday. She is still coughing (dry cough, at night) but her doctor was sure that her lungs were clear. She told me that Julia may continue to cough for a long time but this is sort of a leftover cough from pneumonia. I hope to see the end of it soon though because night coughing is exhausting to everyone.
Julia's counts continue to be stable:

WBC 2.2K
HGB 10.2
HCT 31.9
ANC 1950
Platelets 231K
Monos 5

Her oral medication - 6-mp is increased to 100 percent which means a pill a day for 4 days and 1.5 pills for 3 days, repeat every week. Methotrexate will remain at 75 percent. Julia was able to get an injection in her left hand yesterday (which used to be her unlucky hand - no one could insert an IV there on the first try). Her right hand is getting tired from all the poking.

If everything stays calm and steady here, we won't go to the clinic until January 2005!!! Her next appointment should be in 4 weeks but because there will be no one in the clinic that week of Dec 28, the doctor was nice enough to wait until January 3rd. Of course, we could have gone to the Childrens in DC, but that place is horrible and full of bad memories. The wait there is incredibly long and considering that next time Julia needs to have a spinal tap, it would be a whole day night nightmare if we had to go to Childrens. By the way, yesterday appointment which included taking vital signs, checkup, blood test and injection of Vincristine took less than 45 minutes from start to finish. We came around 1:05 p.m. and left at 1:45 p.m.!!!! I think this is the record.

Julia joined the Reiki Hugs for Kids initiative which is really cool. A group of Reiki healers are doing research so they they enroll kids for free Reiki therapy (distant healing). Julia was assigned 15 Reiki practitioners which are sending Reiki to her this week. My role was to send them Julia's picture and fill out the questionnaire. After that Julia will be receiving Reiki from a chosen healer for 6 months daily and I will be reporting about her back to them. One of the healers let me know that Julia is clairvoyant (he gets feedback from her). The other turned out to be a mum from England whose son fought leukemia in 2000. Like I said this is pretty neat. Their website is http://www.reikimedresearch.com/ and if your child has a medical condition, consider enrolling him or her as well.

Here is some information about Reiki.


According to the classification, designed by the National Center for Complementary and Alternative Medicine at NIH, Reiki belongs to "Biofield Medicine, which involves systems that use subtle energy fields in and around the body for medical purposes". A recent review summarizes available information on the history, theory, practice and research of Reiki [Miles: http://www.pamelamilesreiki.com , http://www.alternative-therapies.com/at/pdfarticles/0103reiki.pdf]


The name Reiki originates from Japanese REI (spirit) and KI (energy, life force). Reiki therapy utilizes spiritual, or universal, energy to assist the healing process. Healing can occur on physical, emotional or spiritual levels. Reiki as a modern healing method was initiated at the beginning of the 20th century by Dr. Mikao Usui (1865 – 1926), a Japanese Buddhist monk, but it is possible to trace the origins of Reiki back to Buddhist healing practices.

To become a Reiki practitioner one gets training from a Reiki master, or teacher. The training includes learning specific information and receiving initiations, or attunements. The purpose of attunements is to allow the future practitioner to conduct the energy of Reiki to assist the healing. Each attunement is a joint meditation by teacher and student, during which the student is receptive, and the teacher is “tuning” the student's energy centers to the Reiki energy, or universal energy of love and compassion. After receiving the attunements, the student becomes capable of transmitting this energy through his or her energy centers in the head, chest and palms to the patient. To perform attunements, the teacher uses Reiki symbols in specific sequence, together with visualizations and breath. (It is believed that Reiki symbols were “received” by Dr. Usui in an enlightening meditation. They have Japanese names, and are derived from Japanese and Sanskrit characters). The same symbols that are used in attunements are used in Reiki treatments, but in a different order. Their purpose is to concentrate the attention and intention of the Reiki practitioner.

Reiki treatments can be performed in person or at a distance. During “hands-on” treatment the practitioner places his or her hands in specific positions on or above the patient's body, and allows Reiki (universal energy) to assist in the patient’s healing. During distant treatment the practitioner focuses on the patient, using Reiki symbols and the patient’s name (and picture), and allows Reiki to assist in healing. It is believed that length of distance between the Reiki practitioner and the patient does not affect the efficacy of treatment, similarly to the presumed effect of prayer.
(This is from the Reiki Medical Research website).

Also, I started a yahoo group for parents of children diagnosed with cancer interested in holistic modalities to help children with side effects of mainstream treatment and to improve their chances of being healthy and long term cure.

Click to join holisticforcancerkids

Tuesday, November 30, 2004 1:21 PM CST

Hello again,

Julia had her monthly appointment yesterday. She is still coughing (dry cough, at night) but her doctor was sure that her lungs were clear. She told me that Julia may continue to cough for a long time but this is sort of a leftover cough from pneumonia. I hope to see the end of it soon though because night coughing is exhausting to everyone.
Julia's counts continue to be stable:

WBC 2.2K
HGB 10.2
HCT 31.9
ANC 1950
Platelets 231K
Monos 5

Her oral medication - 6-mp is increased to 100 percent which means a pill a day for 4 days and 1.5 pills for 3 days, repeat every week. Methotrexate will remain at 75 percent. Julia was able to get an injection in her left hand yesterday (which used to be her unlucky hand - no one could insert an IV there on the first try). Her right hand is getting tired from all the poking.

If everything stays calm and steady here, we won't go to the clinic until January 2005!!! Her next appointment should be in 4 weeks but because there will be no one in the clinic that week of Dec 28, the doctor was nice enough to wait until January 3rd. Of course, we could have gone to the Childrens in DC, but that place is horrible and full of bad memories. The wait there is incredibly long and considering that next time Julia needs to have a spinal tap, it would be a whole day night nightmare if we had to go to Childrens. By the way, yesterday appointment which included taking vital signs, checkup, blood test and injection of Vincristine took less than 45 minutes from start to finish. We came around 1:05 p.m. and left at 2:45 p.m.!!!! I think this is the record.

Julia joined the Reiki Hugs for Kids initiative which is really cool. A group of Reiki healers are doing research so they they enroll kids for free Reiki therapy (distant healing). Julia was assigned 15 Reiki practitioners which are sending Reiki to her this week. My role was to send them Julia's picture and fill out the questionnaire. After that Julia will be receiving Reiki from a chosen healer for 6 months daily and I will be reporting about her back to them. One of the healers let me know that Julia is clairvoyant (he gets feedback from her). The other turned out to be a mum from England whose son fought leukemia in 2000. Like I said this is pretty neat. Their website is http://www.reikimedresearch.com/ and if your child has a medical condition, consider enrolling him or her as well.

Here is some information about Reiki.


According to the classification, designed by the National Center for Complementary and Alternative Medicine at NIH, Reiki belongs to "Biofield Medicine, which involves systems that use subtle energy fields in and around the body for medical purposes". A recent review summarizes available information on the history, theory, practice and research of Reiki [Miles: http://www.pamelamilesreiki.com , http://www.alternative-therapies.com/at/pdfarticles/0103reiki.pdf]


The name Reiki originates from Japanese REI (spirit) and KI (energy, life force). Reiki therapy utilizes spiritual, or universal, energy to assist the healing process. Healing can occur on physical, emotional or spiritual levels. Reiki as a modern healing method was initiated at the beginning of the 20th century by Dr. Mikao Usui (1865 – 1926), a Japanese Buddhist monk, but it is possible to trace the origins of Reiki back to Buddhist healing practices.

To become a Reiki practitioner one gets training from a Reiki master, or teacher. The training includes learning specific information and receiving initiations, or attunements. The purpose of attunements is to allow the future practitioner to conduct the energy of Reiki to assist the healing. Each attunement is a joint meditation by teacher and student, during which the student is receptive, and the teacher is “tuning” the student's energy centers to the Reiki energy, or universal energy of love and compassion. After receiving the attunements, the student becomes capable of transmitting this energy through his or her energy centers in the head, chest and palms to the patient. To perform attunements, the teacher uses Reiki symbols in specific sequence, together with visualizations and breath. (It is believed that Reiki symbols were “received” by Dr. Usui in an enlightening meditation. They have Japanese names, and are derived from Japanese and Sanskrit characters). The same symbols that are used in attunements are used in Reiki treatments, but in a different order. Their purpose is to concentrate the attention and intention of the Reiki practitioner.

Reiki treatments can be performed in person or at a distance. During “hands-on” treatment the practitioner places his or her hands in specific positions on or above the patient's body, and allows Reiki (universal energy) to assist in the patient’s healing. During distant treatment the practitioner focuses on the patient, using Reiki symbols and the patient’s name (and picture), and allows Reiki to assist in healing. It is believed that length of distance between the Reiki practitioner and the patient does not affect the efficacy of treatment, similarly to the presumed effect of prayer.
(This is from the Reiki Medical Research website).

Also, I started a yahoo group for parents of children diagnosed with cancer interested in holistic modalities to help children with side effects of mainstream treatment and to improve their chances of being healthy and long term cure.

Click to join holisticforcancerkids

Tuesday, November 30, 2004 1:21 PM CST

Hello again,

Julia had her monthly appointment yesterday. She is still coughing (dry cough, at night) but her doctor was sure that her lungs were clear. She told me that Julia may continue to cough for a long time but this is sort of a leftover cough from pneumonia. I hope to see the end of it soon though because night coughing is exhausting to everyone.
Julia's counts continue to be stable:

WBC 2.2K
HGB 10.2
HCT 31.9
ANC 1950
Platelets 231K
Monos 5

Her oral medication - 6-mp is increased to 100 percent which means a pill a day for 4 days and 1.5 pills for 3 days, repeat every week. Methotrexate will remain at 75 percent. Julia was able to get an injection in her left hand yesterday (which used to be her unlucky hand - no one could insert an IV there on the first try). Her right hand is getting tired from all the poking.

If everything stays calm and steady here, we won't go to the clinic until January 2005!!! Her next appointment should be in 4 weeks but because there will be no one in the clinic that week of Dec 28, the doctor was nice enough to wait until January 3rd. Of course, we could have gone to the Childrens in DC, but that place is horrible and full of bad memories. The wait there is incredibly long and considering that next time Julia needs to have a spinal tap, it would be a whole day night nightmare if we had to go to Childrens. By the way, yesterday appointment which included taking vital signs, checkup, blood test and injection of Vincristine took less than 45 minutes from start to finish. We came around 1:05 p.m. and left at 2:45 p.m.!!!! I think this is the record.

Julia joined the Reiki Hugs for Kids initiative which is really cool. A group of Reiki healers are doing research so they they enroll kids for free Reiki therapy (distant healing). Julia was assigned 15 Reiki practitioners which are sending Reiki to her this week. My role was to send them Julia's picture and fill out the questionnaire. After that Julia will be receiving Reiki from a chosen healer for 6 months daily and I will be reporting about her back to them. One of the healers let me know that Julia is clairvoyant (he gets feedback from her). The other turned out to be a mum from England whose son fought leukemia in 2000. Like I said this is pretty neat. Their website is http://www.reikimedresearch.com/ and if your child has a medical condition, consider enrolling him or her as well.

Here is some information about Reiki.


According to the classification, designed by the National Center for Complementary and Alternative Medicine at NIH, Reiki belongs to "Biofield Medicine, which involves systems that use subtle energy fields in and around the body for medical purposes". A recent review summarizes available information on the history, theory, practice and research of Reiki [Miles: http://www.pamelamilesreiki.com , http://www.alternative-therapies.com/at/pdfarticles/0103reiki.pdf]


The name Reiki originates from Japanese REI (spirit) and KI (energy, life force). Reiki therapy utilizes spiritual, or universal, energy to assist the healing process. Healing can occur on physical, emotional or spiritual levels. Reiki as a modern healing method was initiated at the beginning of the 20th century by Dr. Mikao Usui (1865 – 1926), a Japanese Buddhist monk, but it is possible to trace the origins of Reiki back to Buddhist healing practices.

To become a Reiki practitioner one gets training from a Reiki master, or teacher. The training includes learning specific information and receiving initiations, or attunements. The purpose of attunements is to allow the future practitioner to conduct the energy of Reiki to assist the healing. Each attunement is a joint meditation by teacher and student, during which the student is receptive, and the teacher is “tuning” the student's energy centers to the Reiki energy, or universal energy of love and compassion. After receiving the attunements, the student becomes capable of transmitting this energy through his or her energy centers in the head, chest and palms to the patient. To perform attunements, the teacher uses Reiki symbols in specific sequence, together with visualizations and breath. (It is believed that Reiki symbols were “received” by Dr. Usui in an enlightening meditation. They have Japanese names, and are derived from Japanese and Sanskrit characters). The same symbols that are used in attunements are used in Reiki treatments, but in a different order. Their purpose is to concentrate the attention and intention of the Reiki practitioner.

Reiki treatments can be performed in person or at a distance. During “hands-on” treatment the practitioner places his or her hands in specific positions on or above the patient's body, and allows Reiki (universal energy) to assist in the patient’s healing. During distant treatment the practitioner focuses on the patient, using Reiki symbols and the patient’s name (and picture), and allows Reiki to assist in healing. It is believed that length of distance between the Reiki practitioner and the patient does not affect the efficacy of treatment, similarly to the presumed effect of prayer.
(This is from the Reiki Medical Research website).

Also, I started a yahoo group for parents of children diagnosed with cancer interested in holistic modalities to help children with side effects of mainstream treatment and to improve their chances of being healthy and long term cure.

alt="Click here to join holisticforcancerkids">

Click to join holisticforcancerkids

Wednesday, November 24, 2004 7:48 PM CST

Hello again,

Julia is feeling pretty good, and her pneumonia seems to be under control. The cough is still lingering but it is not bothering her much and there is no fever - yeah!
The kids had no school today because of Thanksgiving break and there will be no school until Monday - there goes my sanity... They are driving me absolutely crazy (it is raining here) but in a good normal healthy kid way :)

On Monday, Julia has her monthly (or actually 4 weekly) checkup and IV Vincristine. This chemo affected a lot of kids that I know on similar protocols - many had aches and pains and even more awful side effects. Is it a bad batch or what? I keep my fingers crossed that Julia won't have any side effects from this, as usual. I keep reminding myself how LUCKY we are because she is handling the treatments so well.

This Monday John gave her a cranio session and on Saturday Tuan did some acupuncture. Her Qi was through the roof and the blood on the low side. Well.. she is a fighter :)

So thanks for checking and thanks for birthday wishes for me and Danik. Not that we like being a year older... but we have no choice.

I will write more on Monday. Also please wish us luck with counts, I have no idea what they are. Usually after Julia is done fighting infection, they go way down, but of course, hoping for good counts.

HAPPY THANKSGIVING!
Love
Lola

Thursday, November 19, 2004

Hello again,

Well ... Now we know what was the reason for the fever. Julia has pneumonia. Thankfully this is not the worst kind because she is feeling pretty good and walking (running) around and her only symtpom is wet cough. She got her second dose of IV antibiotics and a chest X-ray today. The X-ray showed pneumonia on the right side. I think that is where she got pnemonia last December as well (have to check the journal). So she will be on oral antibiotic for the next 10 days.
Other than that, there is nothing new to report. Tomorrow we have an acupuncture session and on Monday John will see Juia for Reiki/cranio. I am giving her the usual moxa treatments and acupressure massage as well as her supplements.
Today I had some eye-opening experience at the clinic. We saw a girl who is about 9 years old. She is also being treated for leukemia. She was crying and in pain because steroids caused her enormous knee pain. Steroids can deplete blood flow to the bones and the bone can die off. This is irreversible and causes lots of pain. This is rare but once you see someone it makes it a lot more real. I just felt blessed that all we are dealing with is pneumonia. Makes us very grateful.

Thanks for checking and keeping Julia in your thoughts and prayers.
Love
Lola
p.s. Julia's counts on Thursday night in the ER were:

WBC 2.8K
HGB 11
HCT 33
Platelets 209K
Monos 5R>ANC 2200
--------------------------------------
Thursday, November 18, 2004 7:55 AM CST

Hello everybody,

I bet you did not expect an update from me so soon, right?
Yesterday, out of complete blue, Julia shot up a huge fever. I should mention though (to illustrate how sudden it was) that she went to school as usual and even went to her gymnastics class from 5 to 6 p.m., got home, did some reading and was dancing around the house after her bath. But when she got into bed, she was shivering like crazy and complaining of being cold. After about 30 minutes of shivering and chills, I decided that it is time to get her temperature because she felt hot. Sure enough she was running a fever. It went high really fast with the highest close to 104F underarm or close to 40 degrees Celcius for our metric system friends and relatives. And while I wanted to just keep her home, the fever was too high to just wait and see.

I gave her Tylenol at home before taking her to the ER because I was scared of such huge temperature. As usual, nothing could be found as culprit (yes, she did have a slight cold/cough but lungs clear, yes a little WBCs in urine, and yes she did have a flu shot 48 hours before the fever). The history is repeating itself with the flu shot. I think it was Albert Enstein who said that insanity is repeating the same thing and expecting a different result.

Last year Julia got really sick from the flu shot (at least immediately following it, but of course can't tell for sure and admitted with fever and neutropenia).

The good news was that 1) the fever came down while we were there considerably, 2) she perked up, 3) and most importantly her ANC was 2200. The oncologist who talked to the ER doctor wanted her to have a chest x- ray "just in case" but did not insist because several people who examined her said that her lungs were clear. I begged out of this test mostly because she is getting IV antibiotics anyway so what is the point. I am really confused with the whole decision- making process about the IV antibiotics. I thought that with counts as high as hers, she did not really need them. But considering the really high number of bands (white cells indicating possible bacterial infection), I feel good that she did get it. We made it home eventually at 2 a.m. - WHY, why does it have to happen in the middle of the night? And now i am again trying to figure out a good time to bring her back for the second Rocephin dose which tecnically should be given 24 hours after the first one which puts it at about midnight tonight, LOL. Urggg... Sometimes I just want to pull my hair out and scream. I want to get off this ride NOW!!! (And I realize fully well that we got it pretty good and pretty darn thankful for not being admitted yesterday, don't get me wrong).

Julia seems to be doing OK, but no appetite and in sour mood (she did eat a popsicle and downed two cans of ginger ale in the ER plus colored about a billion pictures and read two chapter books, she was really feeling pretty good there). Her fever seems to be gone at the moment (keeping the fingers crossed that this was the end of it).

She decided not to go to school today and I feel that my head is splitting in two after this screwed up night.

I will write more soon.
Thanks for reading and please continue to keep Julia in your thoughts and prayers.

Love
Lola

Tuesday, November 16, 2004 8:51 AM CST

Hello everyone,

Yesterday we had a "fun" visit to the clinic (NOT!). Julia was due for a flu shot and her count check. Well, her blood was drawn without much fussing but when it came to getting her flu shot, she screamed bloody murder. For some reason, she was deathly afraid of getting this shot (it goes into the upper arm's muscle). Our poor NP had to plead with her for a long time while Julia was screaming that it is not fair and there is no way she is getting it. Eventually she had to be held down by me and a lab tech while our NP stuck her. When Julia realized that there was no way out of it, she yelled that she would do it but only if she can kick me three times (as our NP said, this was quite a transformation from angelic to posessed child, eek). It was very quick and I think Julia realized later that her fuss was not worth it but made me promise that there will be no flu shot next year. Oh well... I hope she will change her mind about that as most likely she will need it next year as well. All was remedied after a purchase of YET ANOTHER PAIR OF BLACK PATENT LEATHER SHOES for Julia. She cures all her problems with shoe shopping, a real woman (in case you are wondering she refused a Barbie and a gift bag from the clinic and insisted on shoe shopping instead!!!!)
Her counts are not as good but good enough to continue at the same level of chemo (75 percent).

WBC 1.84K
ANC 860
HGB 11 (good)
Platelets 250K (good)
Monocytes 18 (very good, sign that bone marrow is not really suppressed)

I think the counts are down thanks to a slight cold that she is having now (only a little coughing and no fever thankfully). Julia is feeling pretty good overall. She also got a small mouthsore which is either a cold sore or a sore caused by chemo (because the chemo destroys all quickly dividing cells including cells lining the inside of the mouth).
The acupuncturist told me that in winter acupuncture is not as effective because Chi runs deeper inside the body (less superficial). He showed me a massage technique that works better than acupuncture for this season. Now I massage the UB channels (two channels parallel her spine about 1.5 inches away from the spine) with the heating lotion. This stimulates the immune system and helps to get over colds. I also continue to use moxa almost daily. Moxa is also preferrable for the cold season.

Julia's next clinic visit is on Monday, November 29th - she will get a check-up and IV Vincristine then. It is a first time she has 2 monthly checkups in the same months because this month has 5 Mondays (we go every 4 weeks actually). Please continue to keep Julia in your (positive) thoughts and prayers.

Also tomorrow Danik is 32!!! Please wish Julia's dad a happy birthday.

Love
Lola

Wednesday, November 10, 2004 1:07 PM CST

Hello everyone,

I wanted to write a new entry so that the steroid story would go away from the main page. Luckily Julia's mood took a turn for better even BEFORE she finished steroids. I know that I was working extra hard giving her Reiki that week plus I know several other people who were sending her Reiki distantly. I think that's what did it. She was back to her normal self mood-wise (and her grandparents can prove that that's true) on Saturday. The girls visited their grandparents (both mine and Danik's parents) over the weekend and Julia was an angel, smiley and happy. I just could not believe that was happening! She also had a very nice acupuncture session without whining and without driving all the acupuncturists up the wall with her tricks. Julia is not afraid of needles but she is sick and tired of the medical stuff period. So she uses her Reiki sessions with John and acupuncture sessions to act out by making the practitioners to go out of their way to please her. I think she derives some kind of sick pleasure from this, LOL. Tuan (the acupuncturist) has to tell her stories and play games, while John needs to have a long conversation with her before she agrees to get on the table. Oh well, she is a kid and I don't blame her. The most important thing is that Julia is feeling good (knock on wood) and being just a kid most of the time, not a patient like she was the same time last year.
Next week Julia will have her flu shot (on Monday) along with another blood test to see if her counts are still stable. I continue to use moxa on her which so far has been successful in keeping her counts extra-nice. Keeping fingers crossed that that's the case.
Leah had her 4 year old checkup. She is 30 lbs and 36 inches - a tiny little thing for being a 4 year old. Her height did not even make it on the chart, but at least according to the marks on my door she grew a couple of inches since last year. Poor Leah had a horrible case of sore throat with fever (her throat was coated with white yucky blisters, I looked - eeek) over the weekend. Then by the time she had her check-up, she got better but had a rash. Fortunately it is not scarlet fever as her strep test came back negative (which we know it could be false negative, but she is over it now). Miraculously Julia did not get it (or did not get it yet? I am praying that she won't!!!) and I got a mild case of it. I think it is just a viral head cold because my head hurt so bad, I felt that my eyes are going to pop out of their sockets (did not happen, in case you are wondering).

So Leah could not get her flu shot either because of her rash, so both girls will get it next Monday which I am not looking forward to. But I think the benefits outweight the risks, especially for Julia. Leah is getting her shot at her pediatrician's office and Julia is getting hers at the clinic, plus Leah needs to have a CBC, lead test and thyroid test (the pediatrician was not really concerned about her height but since Leah needs a lead test anyway, she ordered CBC and thyroid function test as well).

Also thanks for stopping by. Jen, thanks for your note, the girls were so excited to hear from you :)

Love
Lola

Thursday, November 4, 2004 9:35 AM CST

Hello everybody,

Nothing is really going on but I just want to add a few things. It is day 4 of steroids, and this has been a hard week for Julia. She was very grumpy and sad yesterday. As you know she started taking violin lessons at school. She has been enjoying the lessons so far but has not been practicing enough at home. I have not been pushing her to practice either - violin was her choice. Well... yesterday, after being on steroids for 3 full days, she decided to get the violin out and tried to play it. It did not come out right (to her), so she ended up screaming and carrying on and on about the violin, how it is not fair that she can't play the sheet music that she wanted to. No amount of reasoning could soothe her. All she wanted to do was skip school today entirely. Eventually I was able to make a deal with her that she would go to school but skip only the violin lesson. I feel bad because I know this is totally steroids talking. On steroid weeks, Julia does not want to do her normal activities like gymnastics or even her favorite theater class.
To make it worse, tomorrow there is no school AND we have very ugly weather (cold, windy and rainy). AND our TV does not work because we moved the furniture and the cable can't reach the TV now (the cable company can only extend the cable using ugly molding which we don't want to do, so no solution to this yet...). AND Netflix will not send us any new DVDs until Saturday or even next week... AND tomorrow is the steroid day #5, so I need to be prepared mentally (chanting THIS TOO WILL PASS) and physically (DO I HAVE PICKLES? PIZZA? WHATEVER ELSE SHE MIGHT CRAVE?) to face it. I know that somehow we'll live through the end of this week but it won't be too much fun.

I forgot to add that Julia did not get her flu shot yet because she started steroids which would have made the vaccination less effective. Julia is due back at the clinic on 11/15 for the dreaded flu shot and for another blood test.

Despite all that, I am really grateful for the minor inconvenience we are going through compared to what many other kids on chemotherapy experience. Julia seems to be handling it pretty well and feels good most of the time. Sometimes it helps to look at things from this perspective and to appreciate what we got.

Thanks for checking up on us!

Love
Lola

Tuesday, November 2, 2004 9:18 AM CST

Hello everyone!

Thanks for stopping by. Julia had her monthly Vincristine IV push yesterday and a checkup. This was a pretty quick appointment and today I got her counts and they are awesome :)

WBC 3.8K
HGB 10.4
Hematocrit 32.8
ANC 3500
Platelets 275K

Now because her counts have been consistently high, her methotrexate is upped to 75 percent to 5 pills. 6-mp will stay at 75 percent for now. Since Julia has a history of crashing counts in the past, the doctors are very cautious now raising her chemotherapy dosages. They better raise the dose slowly than make it too high and cause a new count crash followed by NO drugs for a few weeks. In any case, I am glad that Julia's marrow is working so well, finally. She is feeling pretty good too, but I am sure this week will be *lots of fun* (NOT!) because of steroids.

I decided to have a little experiment this time. I have been telling Julia that because she grew since her last steroid pulse, the pills should not make her as grumpy as before. I made her say it out loud that this time she will be a happier kid on steroids. I wonder if this can make a difference, in any case, it won't hurt to try.

We had lots of fun trick or treating on Halloween. Julia dressed up as Cinderella Butterfly which was a Cinderella dress with wings. Leah was a butterfly, but she got tired of her antenna headband and wings, so she was just a princess :) Now we have bags and bags of candy that I wish would be gone already!

We also moved the furniture again, and now the TV is not connected to the cable. The cable guy told us that the only way for the TV to work again would be to put the modling (ugh ugly) and the cable inside the molding. Which we don't want to do. So we'll see how long we can last without a TV :) So far so good, thanks to Netflix.

Thanks again for checking on us and for your kind messages.

Love
Lola

Tuesday, October 26, 2004 12:52 AM CDT

Hello everyone,

Thanks for stopping by. Our main news (thankfully) is that Leah just turned 4 last week, on October 22nd, so now you can see my bad quality fuzzy birthday pictures from her gymnastics party both on this page and in the photo album!
HAPPY BIRTHDAY LEAH!

Julia has been feeling very energetic and happy lately, unbelievably her counts did not drop (yeah!) despite her cold, so life is sort of normal right now. We had a party for Leah at home just with her grandparents, her aunt Masha and her boyfriend Andrew which Leah thinks is her own personal boyfriend. Then on Sunday we had a gymnastics party for the kids and Leah really enjoyed being a center of attention. My parents got her a kitten (yes, the real live kind) and Leah spent several hours over the weekend just holding and petting her (the kitten, named Shelley lives with my parents - we are not allowed to keep pets here). Leah's new obsession is becoming a farmer. She is obsessed with animals!!!!

There will be nothing medical to report (hopefully) until next Monday. Julia is scheduled to have a checkup, IV Vincristine and begin the steroids again next week on Monday. Please pray that her counts are stable.
We had another hitch with taking Methotrexate again. As many of you know, Julia loathes this medication with all her heart, so at some point and with great difficulty I found the way for her to get liquid bubble-gum version of it. It worked fine for a couple of months until one unlucky day the pharmacist used less compounding syrup and she was able to taste the medication through it. I went back to the pharmacy to add more syrup, but it was never the same again. Now we are back to the pills, mixing them with small amount of chocolate icecream which is not the ideal way to take this medication. It's not supposed to be mixed with dairy because the calcium can prevent it from being absorbed properly but it is better than not getting it at all.

Well, that is pretty much it about us :) Thanks again for your notes and for thinking of Julia.

Love
Lola

Friday, October 15, 2004 5:09 PM CDT

Hello everyone,

Just a quick update on us. Julia has been feeling pretty good except for a little runny nose. She had a cold last week that seemed to have ended, but yesterday her runny nose turned into a faucet again. Despite that, she is pretty active and happy girl, and her counts are really good.

WBC 3.84K
HGB 10
HCT 30.7
Platelets 222K
ANC 2440
Segs 63.5
Monos 13

The counts are probably good because she is fighting a cold but regardless her 6-mp is now raised to 75 percent. The doctors are cautious now because her counts have been so wild so far, so her methotrexate will not be raised for a couple of weeks. If she makes good counts again, her MTX will go up too.
Today I had a conference with her teacher who was very pleased with Julia. She told me that Julia reads at 4th grade level (we knew she reads well, but now it is official!) and that she has great concentration. She does prefer language over math though, but her math skills are great as well. I warned the teacher about steroids and told her that Julia already had 2 steroid pulses this year. The teacher did not feel that Julia was any different during the pulses and I think it is because she is trying really hard to be a good student at school. At some point she ripped her homework during a tantrum and I made her tell the teacher the truth. The teacher did not make a big deal about that even before she knew about steroids. She said that because Julia is such a good student, she does not really care about missed homework - she does plenty school (thank goodness for Montessori system).
Well, thanks again for checking on us. Please continue to keep Julia in your thoughts and prayers.

Love
Lola

Monday, October 4, 2004 3:56 PM CDT

Hello everybody,

Julia had her monthly (BIG) clinic appointment today and we were out of there in record time - less than 2 hours! This is amazing considering that she had a spinal tap today :)

Her spinal came back clear (thank god) and her counts are very nice, except her hemoglobin and hematocrit dropped slightly since she is back on chemo.

WBC 4.8K
HGB 10
HCT 30
Platelets 167K
ANC 2690

Today she is back on steroids (grumpy and hungry and angry, oh my = well not yet actually, but I know it is coming). Also today we saw John for reiki/cranio work. He did not think she was too out of balance, just a little low all over. I have been doing moxibustion on Julia for the last few days and this Chinese medicine technique is supposed to help with counts. I also found articles on pubmed that moxa smoke is cytotoxic to cancer cells when it penetrates the skin which I was very happy to read about. Julia is feeling pretty good, but did not want to be back at school, only because she hates to be late.

I thank you for your prayers and good thoughts, please continue praying for Julia. And don't be shy - sign the guestbook - Julia loves reading your entries and visiting new web sites :)

Love
Lola

Tuesday, September 28, 2004 10:42 AM CDT

Hello everyone,

Just got Julia's counts and wanted to THANK YOU FOR ALL THE PRAYERS AND GOOD THOUGHTS cause guess what? they worked!!!

Doing a happy dance here - we have GREAT counts, yeah!

WBC 3.56K
HGB 10.9
HCT 32.4
Platelets 252K
ANC 1650
Monos 12

Of course, this means going back to yucky chemo (on 50 percent) and not eating for 2 hours before bed for Julia, but I am glad that she is back to "normal", whatever that is. No wonder she was feeling so good. Keeping fingers crossed that this will continue :) The NP told me that from now on Julia's chemo will be increased slowly and one at a time (either 6-mp or MTX would be increased, but never both at the same time)

Love
Lola

Tuesday, September 28, 2004 10:42 AM CDT
Hello everyone,

Just a quick update. Julia has been feeling great and really getting into her new school life. She now takes violin lessons at school, gymnastics and musical theater lessons. She has been feeling very well, however I have no idea what her counts are. Today I am taking her for a blood test after school so we appreciate all good thoughts and prayers that her counts are better. She did have an acupuncture session on Saturday, and Tuan did not think her white count is up yet (based on his chinese medicine diagnosis). We have been doing everything to make sure she recovers, eating well, sleeping well, exercising, and of course, acupuncture, Reiki and moxibustion. Moxibustion is a chinese medicine technique where a special herbal stick is lighted and it can be either stuck to a point on the skin and smoked or heated by bringing moxa close to the point 9 times. I don't know if there is anything that can be done to improve the counts....

Also on monday Julia will have a spinal tap - so please pray that her spinal fluid is clear and healthy!!!!

Thanks for stopping by and signing our guestbook!
Love
Lola

Wednesday, September 15, 2004 8:47 AM CDT

Hello everyone,

Thanks for your notes in the guestbook (my ALL list friends). I did not have any energy to post a new update but we did have some unpleasant developments here this week. As you all know, Julia's counts were really low last week, so she has been off oral chemo since last Tuesday (still got IV Vincristine and steroids though).

On Sunday night, Julia's first day off steroids, she started complaining of a stomach ache and could not fall asleep. I thought it was some irritation from steroids plus three cheese pizzas that she inhaled that day (new steroid craving, at least they are Amy's organic pizza but junk nonetheless). Then when Julia started shivering I realized that this is not normal and brought her into the living room and tried to get some Chamomille tea into her. Sure enough she started running a fever than went up very fast but not very high (to 100.5F underarm). Since her counts were low, a fellow on call told us to bring her to the hospital.
We went to the ER around midnight and Julia's ANC came up to 425 (from 290) and WBC was 1.7, not much considering she just got off steroids this Saturday 2 days ago. Platelets were good at 250K and HGB 9.8. The ER doctor first told me that she was being admitted because her ANC was below 500. Each time I hear that, I feel very helpless and out of control. I begged her to talk the fellow on-call and plead for our case to go home (Julia started sobbing too when she heard she was being admitted). Anyway, since the fever was only 100.6 (in the mouth) and there were no other symptoms except for stomach ache, the oncology fellow changed her mind and let us go home after getting Rocephin. We were outta there at 4 a.m. - and the interesting thing was that Julia did not fall asleep there or in the car but slept until 11:30 after getting home. The nurse we had there in the ER reminded me Nurse Ratchett from the "One flew over the cocoo nest"!!! Julia just got off steroids so she was super dramatic/sensitive/scared about the IV (she does not have a central line anymore). So when she started crying and saying "Mommy, I am scared", the nurse looked at me and said, "my my. don't you have a drama queen on your hands". I was a little tacken aback as this is a pediatric cancer patient she was talking about not some bratty kid who was scared for no good reason. Then when she was taking the IV off and Julia started crying again, the nurse ordered her not to scream ?!!!???? - no comment. In our clinic, our nurse practitioner always tells children that it is OK to be scared and it is OK to cry! And finally when they brought Tylenol (usually I bring our own but I forgot yesterday), the nurse was really pushing Julia to take the grape flavor because it was more concentrated and less volume to take. Julia (if you know us long enough you know) has a big issue taking meds and very particular. So I tell the nurse, let her have the cherry flavor. Bid deal, right? No! That nurse was insisting that the grape flavor was better. I said that we should let Julia decide. The nurse looked at me like I was allowing Julia to snort cockaine or smoke marijuana at least and said, "Sometimes moms have to tell the children what to do and not let the children do whatever they want to do." (yeah I would really take my stand regarding the Tylenol flavor at 3 a.m. with Julia on steroid, what are you crazy, woman?) Instead of that I just said, "You know, I just choose my battles." and the Nurse just shrugged her shoulders and left.

Then we had to go back for another shot of Rocephin and a CBC to the clinic the following day. Julia's counts came back even lower that time:

WBC 1.37K
ANC 230
HGB 9.5
Platelets 237K

But thankfully we did not have to go back to the hospital because Julia already got two doses of this strong antibiotic Rocephin and so far nothing grew in the cultures (checking for blood infection takes 48 hours and I did not hear anything from the hospital since we left). So.... This means waiting two more weeks before checking blood counts again.

The good thing is that Julia is feeling really good (knock on wood, three times!), her mood is excellent and she LOVES her new school. The only weird thing is that she sometimes has a difficulty falling asleep now. Yesterday she was up till almost midnight lying in bed with her eyes shut and unable to sleep???? Is it a side effect of steroids?
Yesterday I went to a parent meeting at school. This is a Montessori elementary school and I was very pleased with the teacher who started the meeting off with a poem called "A lag behind child in a hurry up world." This poem is basically conveying a message that children are often told to hurry up, finish the test and not always have a chance to explore naturally or ask questions/deviate. Montessori philosophy is entirely different. Chidlren are taught to take their time and move on at their own speed, be it faster or slower than average. Anyway, Julia is very excited each morning and cannot wait to be in class. Of course, with counts as low as hers are, I am very nervous about her catching something, but our clinic encourages children to lead normal lives if they feel up to it. So that is why Julia goes to school, gymnastics and theater this fall. The same time last year, she was feeling less energetic, just starting her Delayed Intensification phase (hard chemo) and in general more fragile.

Personally I feel sort of screwed up since that night spent in the ER. I don't know how night nurses or others who have to work nights can keep their sanity!

Oh well... as you can see this is yet another bump and another delay in treatment but as usual I am grateful that Julia is feeling good and the infection is not serious. She will have her acupuncture treatment on Saturday and Reiki/cranio next Monday.

Please send prayers/positive thoughts that Julia's counts come up soon and that she does not catch anything!

Love
Lola

Wednesday, September 8, 2004

Hello everyone,

Like I was saying below, the Lighthouse vacation was a much needed break from our everyday struggles. But yesterday we were back in business :( Julia had a checkup (she grew 0.7 cm this month to 112.7 cm and is now 22 kg) and IV Vincristine. She also had her first day of school as a first-grader in her Montessori school! She loved her new campus and made new friends on the first day! Now that Leah is back to school as well (as of today), I have some time to update the journal here.

Dr. G. did the checkup and again said that Julia seems to be doing very well. She has no reflexes in her knees (thanks to Vincristine or "Mean Christine" as our friend Madie calls it), but it does not affect her walking or running at all. Dr. G made Julia walk on her heels and on her toes and she did a beautiful job. Don't ask me how one can do without the reflexes, but I always knew that Julia is special!

Unfortunately (as I expected) her counts are again in the toilet.

WBC 0.51K
ANC 290
HGB 9.9
Platelets 173K
HCT 30.5

This drop in WBC and ANC is probably due to a viral infection as we all had some strange stomach bug a couple of weeks ago plus Julia has been on 100 percent of her oral chemo this month. Oh well.... Back to off chemo we go (she still gets her steroids and Vincristine regardless of counts), it is just 6-mp and oral methotrexate are on hold for now.
Of course, I am somewhat freaked out because we just got back from vacation, flew back on two planes, sat in crowded airport, now Julia is back to school (read germy kids) and today I promised to take her and her friend to Build a Bear to celebrate Julia's SIX AND A HALF birthday party (don't ask!) and a gymnastics class. Whew... this was one run-on sentence. Anyway, our nurse Beth told me to relax and please please please keep her school and proceed with activities as planned. I guess she is right but I would feel better if Julia's ANC was over 1000....

I promised to write more about the vacation... I think I will write a little bit in each entry for a while because I don't have enough concentration or will power to write one huge entry. So today I want to write about the cookie fairy. Each night after we came back from fun and games to our rooms, we found a nicely wrapped cookie on each pillow with a sweet card, hand-addressed and written for each member of our family. The longer we stayed there, the more personal and involved the cards had become! The girls just loved these cards and cookies (oh well, we did too!)
Like I said everything about this retreat was so thorough with much attention to every little detail. Even the letter with directions/instructions came in a clear plastic bottled half-filled with sand and shells (imagine my surprise when I opened my mailbox and the bottle fell out of there in my hands!!!!)

OK, more to follow.
Thank you for your notes in the guestbook. If you came to visit, please don't be shy, sign the guestbook!

Love
Lola
---------
Monday, September 6, 2004 10:52 AM CDT
Hello everyone,

Get ready as this is going to be a long update. First of all, I apologize for not updating sooner - the rest of August was pretty quiet and Julia had been feeling pretty good the whole time! We never even had to go to the clinic for counts this month. But on September 1st we left for the most exciting vacation we had since Julia was dx - some you may have heard of the Lighthouse family retreat for kids with cancer and their families. I had no idea of how amazing this retreat would be. We just returned from this vacation late last night.
A little bit of background about the retreat. It was founded in 1999 by Melinda, a pediatric oncology nurse, who had a vision of bringing young cancer patients to the ocean for fun and allowing families a break from their daily struggles. Since then she organized several retreats each year. We got to go to the Fort Walton Beach retreat (yes, we did avoid Frances!) and got to stay in the beachhouse overlooking the beautiful Gulf of Mexico. There were 12 families there, sadly each one had a child with cancer (brain tumors and leukemias mostly). From the very first day we were showered with attention and love from volunteers. There were so many volunteers helping with everything from taking care of kids to doing our laundry to serving meals to putting sunblock on the kids, etc.etc. I am amazed at how efficient everything was.
We arrived at the airport and two volunteers drove us to the retreat. The area looks like a real tropical resort with palm trees and houses painted in dollhouse colors along the coastline. On arrival, we were greeted and magically our suitcases appeared in our top floor rooms (we got two rooms!) We were assigned two Family Volunteers that specifically took care just of our family. I think we could not have gotten a better match. One girl was an opera singer who had a break between gigs and wanted to do something worthwile on her free time. The other was a girl from Malaysia (living in America) who loves kids. These two volunteers were with us the whole time, showering us with the attention we are not used to! The most surprising thing was the little details that were so thoughtful. For example, we all ate in the main house and volunteers played with kids and served us food during the meals. There were volunteers, mostly young guys, who dedicated their time JUST to entertain the kids, sing songs, play silly games, tickle kids and basically give us (parents) a huge break!
Julia and Leah did not want to go home. Each day was packed with fun things from early morning to late night and when we went back to our room each night, it was neat and clean and laundry was done! What more could we ask for?
The gulf water was always calm (green flag), so calm that you can see little fish swimming in there and it is very to swim without struggling with waves. The sand was so clean and white it looked virgin.
OK, I gotta go now since we just got back and finish unpacking and prepare for the first school day tomorrow. But I promise to write more as soon as I can.

(to be followed)

Lola

Thursday, August 12, 2004 9:58 AM CDT

Hello everyone,

We are in the middle of a steroid pulse, need i say more? Julia and Leah are both trying to fight some kind of viral bug and Leah even had a fever for a couple of days, but thankfully this is going away now. The steroids are getting really old now and we are all oh so tired of the crankiness and weird food cravings they bring. Julia had her regular checkup and Dr. A. was very happy with Julia and declared that she is in excellent shape - yeah! Her counts were really good, too good (except for lower HGB) probably because we caught them right at the beginning of that viral infection (the WBC usually goes up at the beginning of a cold and then plummets down after it's gone):

WBC 4.66K
HGB 10.3
HCT 31.2
Platelets 282K
ANC 3690

So Julia's chemo was increased to 100 percent - which means taking medicine every night. I now give her 6-mp pills after she is asleep and half the time I just stick the pill in her mouth (it's tasteless) and it dissolves there. But if she wakes up, I have to mix it with water and feed it to her with a teaspoon. The bubblegum methotrexate is working well so far (knock on wood) and we had no throwing up or nausea with it!

Julia became quite a swimmer and can now dog paddle, swim breast-stroke style, under water, jump off the diving board and more. She really built up her strength and muscles. Unfortunately steroids also make her very tired, so it is getting harder with each day to make her do anything, but thankfully the steroids pulses last only 5 days each month. Julia grew 0.5 centimeter this month to a total of 112 centimeters and she is 22 kg (or almost 50 lbs). She is becoming so tall! I cannot believe that she is starting first grade (well a Montessori equivalent of it anyway) this fall!

Last week was definitely not Leah's week though. The poor kid had some nasty cold with sores in her mouth, fever and managed to step on her towel in the pool and fall on her face. She ended up with a mouth full of blood and a chipped front tooth - eeeck! Julia was scared for her and together they fed off each other fear, crying for an hour. But it is all better now though :) Julia even said that falling on the face and getting a mouthful of blood was worse than getting leukemia because leukemia does not hurt and does not make one's mouth bleed. Hmmm... i would love to be a 6 year old for a few days to have a perspective like that!

So that's it. Please leave a note if you visited. We are hanging around here with nothing much to do, especially during the steriod week - just trying to get over it! Last week we went to a Glen Echo Park twice - enjoyed the puppet theater and the historical restored carousel there. When Julia feels happy again (should be back to normal self early next week), we will try to go to DC's zoo and National Gallery - they have a morning program for kids, maybe to a Baltimore acquarium. I am grateful that we are living so close to DC where there are so many things for kids - theaters, museums, parks, etc. But for now, I am keeping my fingers crossed that Julia's cold will go away uneventfully and she feels good to enjoy the rest of the summer!

Lola

Monday, August 2, 2004 6:56 PM CDT

Hello everyone!

Everything is kind of quiet here. Julia has been feeling pretty good and her counts are OK.

WBC 2.31K
HGB 11.5
HCT 34.6
Platelets 240K
ANC 1240
19 percent monocytes (normal is under 10, high number means that the bone marrow is recovering, yeah!)

Since the counts are decent, Julia's chemo will be increased to 75 percent. Which means that I have to go to the pharmacy twice tomorrow to drop and pick a prescription for oral methotrexate (single dose, liquid with bubblegum) at 75 percent concentration.

The girls's camp is over so today we spent the first day together, running around. I must say that I am wiped out. But today was a little crazier than usual. In the morning we went to the clinic for a blood draw, then to Target for some back to school stuff, then to the swimming pool, then to a Reiki appointment and finally to a gymnastics class. This is NOT our typical day. John felt that Julia was balanced today - that's great. I hope that she will continue with treatment in the same fashion and stay healthy.

The lifeguards in our pool are really cool. The girls love them and the lifeguards say that Julia and Leah are the best-behaved (???) and interactive (OK, i buy that) kids that frequent our pool :) One of them even took the picture that is now on the front page!

Thanks for checking on us and for your kind notes.

Lola

Wednesday, July 21, 2004 10:25 AM CDT

Hello everyone!

The best news so far is that Julia is feelig great and her counts are back up!

WBC 3.39K
HGB 11.2
HCT 33.7
Platelets 268K
ANC 2140

Everything came back up from last week very nicely, especially ANC. So we are back on 50 percent of oral chemo. Today I was able to get oral methotrexate flavored with bubblegum. Keeping my fingers crossed that it would work.
Over the last few days Julia had an acupuncture session and another reiki/cranio work done. Her cough is now completely gone. The girls still go to camp everyday.

Nothing else is happening. On Thursday I have an appointment with a childhood psychologist who hopefully can help Julia overcome her disgust for taking medicine. On Thursday I am going there alone though to talk about Julia.

Well, that's it for us. Thanks for stopping by!
Lola

Friday July 16, 2004

Hello again,

This is just a quick update on Julia. She is still coughing and now has the runny nose again. I am not sure if this is a beginning of a new cold or a new twist of the old one??? Leah seems to have the runny nose and some cough (at night only). Could this be allergies? Just what we need combined with low counts....

Also steroids kicked in really fast this time, maybe because there was only 3.5 between this and last steroid pulse. Last time we started them 3 days later because of our NYC trip and this time we started a day early because of scheduling issues. It is not a big deal as far as treatment goes, but it's definitely different on Julia. Also the weather is cooler and she does not feel like going to the pool. Swimming helped her last time and her mood was pretty good, considering... But this time...

Usually when Julia is on steroids, she uses the old remedy to make herself feel better - SHOPPING! As a result, she really has evrything that she could ever want. But yesterday it did not matter. It was steroid day #4 and we HAD TO go shopping. She ended up getting an Ariel doll and some stickers and NO NEW SHOES (yeh!). Leah was happy that we went to the toy store though...

So that's it. Please send positive thoughts/prayers that Julia feels better and does not get a fever. With low counts like she has now a fever will mean a hospital stay.

Thanks for stopping by.
Lola
-----------------------------------
Monday, July 12, 2004 8:53 PM CDT
Hello everyone,

What a long day we had today. This was the day to start another cycle of Long Term Maintenance, so Julia had a spinal tap, IV Vincristine, and began a 5 day steroid pulse. Needless to say today was very nerve wrecking as the spinal itself is a very difficult to watch procedure, plus I had to wait all day for the all clear result back. yes, thankfully, Julia's spinal fluid is healthy and clear and for that I am very grateful. The spinal itself was uneventful as I think we finally figured out the right way to do it - minimal sedation and local anesthesia. All she gets for sedation is Fentanyl which does not even make her sleepy, only happy. Julia grew another quarter inch in the last 3.5 weeks and is now 111.5 centimeters (whoever has math skills can try to convert to inches).
Her cough is still persisting but it is not bad and her lungs were clear, so I hope that she would just get over this cold. I have the same thing, so I know it is not too bad now and I hope the steroids that we started today will not make it worse. Oh, Julia's counts are in the basement again thanks to the cold (at least I hope that's just the cold that made them go so low).
I almost had a heart attack today because the nurse left a message on the answering machine that she got Julia's labs (including spinal results) but would not tell what they are and that I had to call back. At this point, my mind went blank and I could not hear anymore. I thought the labs showed you know what and I was scared out of my mind. So I called Danik at work who listened to the nurse's message again and of course, all she meant was that she would not leave the labs results on the answering machine because she did not have my consent (privacy issue). Somehow I survived those few minutes between my getting her message and Danik's listening and explaining it to me. How can worry make me so stupid? Oh well.... The most important thing is that Julia's spinal was clear - big sigh of relief.

Here are her counts (we were at the toy store when I got them so I don't remember exactly all of them)

WBC 1.2K
ANC 420
HCT 34
Platelets 316K
HGB 10.3

As you can see everything is down especially ANC, but platelets are up. This is normal for Julia after she has a viral infection.

After the clinic she did not want to go school complaining of feeling tired and dizzy (probably a little nausea from IT Methotrexate). But later we did go to get some Reiki from Tom and John. This was a hard session as Julia just would not lie down and cooperate and finally when she did, she would not stop talking and annoying the guys. They were great though, as usual. At least she switched from angry to chatty mood. Tom felt that Julia has some pentup anger and frustration and mostly she was psychologically not physically unbalanced. This was somewhat consistent with what Julia's oncologist feels - she wants Julia to see a childhood psychologist who specializes in pediatric oncology. Apparently Julia is feeling some loss of control and she is definitely sick and tired of taking medicine, being dragged to a bunch of doctor's appointments and just plain feeling crappy. I am sure she does compare herself to other kids and feels that it's not fair to her.

By the way, last week Julia ended up throwing her oral methotrexate once again and today I successfully pried prescriptions for oral bubble-gum flavored methotrexate - separate prescriptions for 5075nd 100trengths (in case her dose needs to be adjusted). However, since Julia's counts are so low, there is no need to take any oral chemo at least for a week until her ANC is over 1000. She is only taking steroids right now and for some reason she does not mind them. For those who don't know steroids taste like something straight out of the horror of all horrors as far as tastes go. I tried a tiny drop of liquid steroids flavored with bubble gum and the aftertaste almost killed me and I had tears in my eyes for half an hour. How can a human take a whole teaspoon or three of the stuff and still be alive is beyond me. Probably Julia inherited this hate for yucky medicine from me????

Well... if anything, I am glad there will be no more spinal taps till October!

Leah is now making progress in the pool and can now go underwater and even swim a little underwater.

Thanks for everyone's encouraging notes - we love them! So please sign the guestbook if you stopped by.
I will try to post new pictures soon as Julia got really tan and her hair now has more golden highlights in it and
is longer.


Lola

Wednesday, July 7, 2004 2:49 PM CDT

Hello everyone,

I wish I could write that we are still having a great time, but unfortunately the three of us (excluding Danik of course) picked up a nasty cold yet again. Julia has been running a low grade fever on and off since Sunday and I got my own fever today. It feels really awful to be sick and makes me really appreciate what Julia is going through on a daily basis.
Yesterday taking methotrexate turned into a disaster. After an hour of coaxing, pleading and yelling Julia finally took her medicine only to throw it back on me, the couch and the floor. It is just not fair. She tries so hard but she just can't stand the taste. Her nurse told me today to repeat with half dose again and I am not looking forward to it at all. I know that with the cold the chances of Julia keeping this stuff down are pretty slim. I tried to teach her again to swallow empty gelcaps and we had one success out of about 10 failures. Cannot use this method tonight... Julia's nurse Beth said that we should get in touch with the hospital's psychologist because she thinks that Julia's reaction is totally psychosomatic and that kids don't get instant nausea from chemo. Beth thinks that Julia is too smart and is using all kinds of delay tactics (like asking me to ask for a liquid prescription) to delay taking medicine as far as possible. Julia really hates this medicine though and I don't care if it physiological or psychological, but she has a long way to go taking this medicine on a regular basis and we need a solution.
I am so grateful to John because he agreed to see Julia today right after I called him - he did the usual cranio-sacral work and reiki and put some essential oils on her chest and feet. She felt better immediately and was really hungry. I really hope that she feels better soon.


Thanks for stopping by. On Monday Julia will have a spinal, so please pray that her spinal fluid is clear and healthy and that the procedure will be quick and more or less painless.

Lola

Friday, July 2, 2004 10:43 PM CDT

Hello everyone!

Julia has been having a great time this summer so far (knock on wood). She is attending a day camp at her school and swimming each afternoon. She became quite a swimmer lately and goes to the deep end of the pool with no fear. She can now clear the whole pool without stopping and now I can see even kids older than her who cannot swim as well! I am so proud of her.

Her counts are great too! Thanks for your well wishes and prayers, please continue to send Julia positive thoughts.

WBC 2.22K
HGB 11.3
HCT 36.5
Platelets 209K
ANC 1270

Since she made counts this week, her methotrexate dose is increased to 6 pills (100 percent) and her 6-mp is already at 100 percent. I hope she will continue to stay strong, healthy and with great counts. (no more scary fever and neutropenia please).

Leah has been having fun at the pool too and now overcame her fear of water. I am trying to teach her how to swim and now she can get underwater for a few seconds. She learned how to write her name, but does not always write the letters in the right order.

Well, on July 12 Julia will have a spinal (that is if I manage to schedule it successfully).

Thanks for checking up on us, please sign the guestbook if you visited.

Lola

Thursday, June 24, 2004 12:06 AM CDT

Hello everybody!

This is just quick update to let you know how we are doing. Julia seems to be feeling pretty good, but is somewhat cranky and more tired thanks to nasty Decadron (steroid) that she just finished on Monday. Thankfully the pool is now open and Julia has been able to "swim off" her frustrations. Even she noticed that being in the pool relaxes her a lot. She is now officially a swimmer! The girls made friends with our friendly lifeguards (young college girls) who are always happy to play with them, allow them a lot of freedom, play with their hair, draw with chalk, etc. So now we hang out at the pool almost daily.
Julia also had a reiki/cranio session on Monday which also helped to reduce steroids side effects. Getting methotrexate into Julia this week was extremely hard. This is oral chemo that needs to be taken once a week. Her full dose is 6 pills, but now she is only taking 4.5 (reduced to 75 percent). I don't think they taste bad, but the problem is that the medicine has to be taken on empty stomach, so mixing it with icecream or the like is out of question. Usually mixing with water and cranberry juice works, but this time Julia took about 45 minutes getting this down. Blech, I don't blame her. But it gets a little old and we still have about a year of chemo to go...

I noticed a strange side effect that Julia experienced for the second time. When she gets IV Vincristine, her hand hurts around the injection site, but not right away, a few days later. And it takes a few days for this dull pain to go away. It is not too bad though.

We will be going to the clinic again next Friday to recheck counts and adjust dose if counts are good. Wish us luck that counts are stable.

Lola

Update June 18, 2004

Today we were back at the clinic for business as usual. Julia had a checkup, received her monthly Vincristine by IV and started her steroids (oh no!).

Her counts are staying stable, so her 6-mp is increased to 100 percent but we'll continue with 75 percent of methotrexate for the next two weeks when her counts will be retested again.

For now her CBC looks like this:

WBC 2.74K
ANC 1860
HGB 10.7
Platelets 224K

Julia's checkup was great and she grew about 1 centimeter this months - yay!

Thanks for checking up on us, and don't be shy, leave a message if you visited.

Lola

--------------------------------------------
Thursday, June 17, 2004 8:09 AM CDT
Hello everybody!

WE ARE BACK FROM NYC!!!!

Where to begin... We had so much fun crammed into those 5 days that it is hard to remember what we did on each day, but I'll try.
The trip started on Saturday when the black stretch limo pulled up to our lobby and took us to the Union Station in DC. The train took us to Manhattan and the fun began. That same day on Saturday, we arrived in the afternoon and dumped our suitcases in the hotel. It was only a couple of blocks from Central Park, so went for a walk. Of course, we had to stop by the Plaza and walk around there. Julia immediately spotted the Eloise (tiny) boutique and ended up buying the Eloise doll and accessories. Leah had to have Weenie as she is our family's designated dog lover. The best part about the park was the horse carriage ride. Actually it feels very strange riding this carriage as it moves very slowly and you feel each step. Personally I felt pretty bad for the tired horse Rusty that we got. We also saw Roma, Inna and the kids and totally trashed the NY Cafe - well, not us but the wild kids, both theirs and ours. It was good to see you guys!

Since we had nothing planned on Sunday we decided to meet with my school friends and go to the Brooklyn Aquarium. Oh we did go to the Central park before that on Sunday too - the girls had fun playing on this enourmous playground surrounded by skyscrapers on the background. The views were breathtaking. Thanks Natasha for picking us up in Manhattan and driving to Brooklyn. In the aquarium we caught the seals show and the kids had a chance to run around. Strangely enough, we all came back with very nice tans - which I did not expect from a vacation in NYC! My other school friend (Makar) was their with his two boys, so our girls, Natasha's three year old son and Makar's two boys (ages 10 and almost 5) spent a great day together. Of course, we HAD to go to Brighton Beach and bought some Russian kids movies on DVD. We even bought the Spirited Away DVD translated into Russian (the girls watched it today and it's great!). We even went to Glechik, a Russian restaurant specialized in "vareniki" and "pelmeni" which I did not have a chance to eat for like 12 years! We even tried venturing to the boardwalk there, but it was too cold. Julia did manage to find a few seashells in 3 minutes that we spent there.

On Monday we were on our own again, but we had a planned visit to the new Rose Center (planetarium), which is a part of the Museum of Natural History. We had a nice walk along the Cental Park West to 81st street and after a small confusion with the tickets, we ended up seeing THREE shows there. The new planetarium is awesome and the experience is hard to describe. Then we saw the Bugs show at the Amex theater in the Natural History Museum part. The girls really enjoyed seeing on a huge screen the adventures of real insects. Finally we saw the live frogs show and get this, Leah and Julia saw their favorite frog called Orange Mantella live! (this is the frog that Leah named Baby Barbie according to her teacher because it is pink and shiny). I honestly don't remember what else we did that day except that we had a reservation at the American Girl Place cafe at 5:30. I think we just walked from the Museum to the 5th Avenue and went down to that place. I think this was the biggest highlight for Julia (unexpectedly). If you don't know what it is, check out their website americangirl.com. Basically it is a store where they sell these overpriced dolls, each representing a historical but made up character girl. They come with books, outfits, furniture, etc. The store itself was amazing because next to each doll, there was a beautiful display representing her story, a part of her room, a window to the outside behind which there was a TV screen displaying a video of what the outside world looks like for each particular doll. Especially I remembered one doll Kirsten whose window showed lots of kids playing in the snow and it looked like a real window too! After much (happy) consideration, Julia picked her American Girl which ended up being Samantha. It is because her best friend is Samantha! Of course Leah had to have a bitty baby so she picked an African American one. We ended up eating at their Cafe (I will put a photo of that place on this page) tailored for girls like Julia. They even provided special chairs and tea cups for dolls! You gotta be 6 years old to really get it, I think!

On Tuesday, we only had a Broadway show planned, so we just went to Central Park again and visited their zoo. As many of you know, this zoo is small but very beautiful. The polar bear was very funny as he looked just like an chubby old man swimming on his back and pushing away from the walls with his feet. He even gave us a whole show putting a plastic bucket on his head. Again we saw the little show with the sea lions and Leah told me that she has to have one of them at home. I forgot to mention that during our trip we walked A LOT and Julia showed an amazing stamina. I am very proud of her. It was very hot that day and we made a mistake of walking to Serendipity 3 which ended up on the wrong street (well, I remembered the address wrong but who cares) and we had to walk 6 blocks back after walking for like an hour before that in the smoldering heat. This is a cool place with very interesting interior and the food was amazing. In general food in NYC is very good. This was already enough for that day so we went back to our hotel to rest before the show. The decision to walk to Lunt-Fontanne theater was a bad one because we had to walk with thousands of people on the street, it was so crowded that if you stopped to tie your shoelaces, you'll be walked over or so it seemed. Getting the cab seemed impossible, but the worst part was that I again mixed up the address and we had to walk 4 blocks back to 46th street instead of 42nd and were running incredibly late. But somebody saved our day! Out of nowhere a bicycle taxi appeared driven by a woman. Her carriage seemed very small for the four of us, our huge backpack and the stroller but somehow we managed to get into that. It was an amazing ride, much more scary than the Ferris wheel (more about that later). But she did deliver us to the theater on time. It turned out that this lady also volunteers for the Make-a-Wish, talk about serendipity.

The show, Beauty and the Beast was truly magical. The actors were great, most of them are famous. They followed the same exact plot as the Disney movie/cartoon. You really have to see it and i won't even try to describe it here. The costumes, the music (live orchestra), scenes, special effects - everything was perfect. Julia loved the Beast and kept saying that he is just like in the movie.
She sat there absolutely transfixed for the whole show.

Finally, Wednesday was our last day. We did not have much time as we had to check out of the hotel at noon. So all we did that day was go to the Toys-R-Us near Times Square and rode the Ferris wheel. This is the largest toy store in the world and it's 5 stories tall! Other than that, it is just an ordinary Toys-R-Us. The girls were having fun, and I was slightly nauseaus and very scared riding that huge wheel. Danik even refused to get on it at all as he gets dizzy on rides!

All in all our trip was lots of fun but we were happy to be home. I worried the whole time about germs - we literally went through thousands and thousands of people there. So far Julia seems to feel great and I hope that she continues to stay healthy! There are so many things I did not write about such as our hotel (modest, but interesting Art Deco design, great location across from Carnegie Hall), the hustle and bustle, the Carnegie Deli (great corned beef), the taxi rides (thrilling to say the least).

Our ride back was uneventful and we were met with even a bigger limo (more stretch!). Being home is great! The girls did have fun and so did we. But I must say that we won't be going to NYC with the kids for quite some time. I know that at some time in the future the girls would love to visit the American Girl Place again and that we MUST see more breathtaking Broadway shows.

Thanks for everyone's notes in the guestbook. I am going to try to upload some pictures next.
Interstingly enough we did run out of film many times when we badly needed it, but I have some pictures in the digital camera.

Lola

Friday, June 11, 2004 8:12 AM CDT

Hello everyone,

Julia has been feeling very well and enjoying the summer - she just learned to swim but does not go more than a few feet at a time, we are working on that!

Second, Julia is going to hit the Big Apple this weekend. We had Ben from Make a Wish foundation here this week who presented us with our train tickets and itinerary for the 5 day stay in NYC! We will be staying in Park Central, right across from Carnegie Hall and just a short walk from the Central Park, Times Square and all the fun places in NYC. We have a whole bunch of really fun stuff planned and I will write more when we come back. The weather seems to be cooperating and it should be around 70-75F and sunny the entire time we'll be there. We are leaving tomorrow morning and coming back on Wednesday! Julia is very excited.

We had an acupuncture treatment yesterday and Tuan told me that Julia is in great shape, both chi and blood are great. This is great as I am a little paranoid about germs in crowded NYC, but that's the risk probably worth taking.

Wish us luck that we don't catch anything there or on the train.

Lola

Friday, June 4, 2004 9:02 PM CDT

Hello everyone,

Again there was really nothing to write about lately - medically - which is of course is a very good thing. Julia has been feeling very energetic and strong (knock on wood three times!!!). She has been on 50 percent of her oral meds (6-mp and methotrexate) and her counts are great.

WBC 3.53K
HGB 11.1
HCT 34.1
Platelets 247K
ANC 2160

So today Julia will be starting on 75 percent (a 25 percent increase). i am keeping my fingers crossed that she continues to feel good and the counts remain stable.

On May 27, we saw Julia perform in her school's play. She was an anthill, yes an anthill, but most of the roles were like that - anthills, creeper vines, river, etc. She was also a narrator. The kids were excellent and the play was a great entertainment for us. Even my and Danik's parents and Masha and her boyfriend came to see it. Nobody messed up and I was impressed by the professionalism of the little 5 and 6 year old actors.

The pool opened but the weather is so cold now that we only went a few times. Julia is swimming pretty good with water wings on her arms and I hope that by the end of this summer she will swim without them on her own. We continue with acupuncture and everything else as usual in addition to chemo.

Thanks for checking on us. Don't be shy, sign the guestbook if you visited. Julia loves your entries :)

Lola

Wednesday, May 26, 2004 8:36 AM CDT

Julia is a queen of three hour fevers. On Monday night (May 24), she started throwing up. I thought that restarting chemo had something to do with it, but then she started running a low grade fever overnight. For the first time, I decided not to call the clinic and wait till morning. She threw up again during the night. But by morning her fever started to go down and was completely gone soon. I still have no idea what it was, probably some stomach bug. Yesterday I took her for an acupuncture session first thing in the morning. Tuan did not think it was anything serious and Julia felt much better very soon. The timing was also good for reiki this time as we just went to Tom and John on Monday, the day she got sick. Hopefully that's all there is to it, but now I have to wonder what it did to her counts, if that was indeed some kind of virus. We won't know until next week.
Yesterday despite not feeling so hot, Julia insisted on going to school just for their play dress rehearsal. She is so excited to be in the school play. I think she remembers everyone's lines.
Today she is feeling pretty good, still not eating much, but no more stomach problems. I am keeping my fingers crossed.
Make a wish called to say that children under 5 cannot attend the majority of the Broadway shows for children, and the only one they found so far is Beauty and the Beast. They wanted to know if they should book tickets just for Julia and one adult for the Lion King. Poor Leah will not be able to go and see that show which I am sure she would have loved. Our trip hopefully is scheduled around June 12, which is very soon and Julia is very excited.
Lola

May 21, 2004 Update

Thank you everyone for your good thoughts and well wishes. Julia finally made counts today!

WBC 2.06K
HGB 10.6
HCT 32
Platelets 156K
ANC 1100

These are really nice counts even if they are a little on the low side and not even close for normal. But they are good enough to resume chemo at 50 percent of normal dose.
Julia is feeling good.

Also today I just had a conference with the teacher about both girls. Both of them are doing very well. Julia excels in everything and there is not even one area where her teacher thought needed improvement. OK, forgive me for bragging but I was very pleased. This year Julia became a very proficient reader (reads at the same speeds as she talks), learned addition/subtraction/division and multiplication, fractions and even sentense analysis. I cannot even begin to describe how proud I am. Leah was described as a teacher's pet, everyone's favorite and as a very smart kid. She excels in everything except writing, but I think it's OK considering that she is only 3.5 years old. Her teacher used many endearing terms talking to Leah.

Ok, gotta go. More news later.
Lola

--------------------
Wednesday, May 19, 2004 8:51 AM CDT
Hello everyone,

I am not writing because we have any news but simply because there was no update for a while. We have not even had her counts done in over a week. Honestly I am very anxious to know what her counts are like and at the same time I hate knowing them in case they are not improving.

Julia, on the other hand, is feeling pretty good. Her steroid pulse this time went pretty smoothly with no major meltdowns. We had two funny episodes last week while she was on steroids. The first one revolved around shoes as Julia suddenly overnight outgrew her favorite patent leather shoes. Of course this had to happen while she was on steroids. As many of you know, steroids make everything worse. Julia had a hissy fit over shoes so we ended up going to the mall and buying new black patent leather shoes, 2 pairs of fancy shmancy sandals and new ballet slippers. I don't know why she needed new ballet slippers other than her old ones are getting small. She is not enrolled in the ballet class at the moment and she even refused to take the new slippers to school (and she needs them there for practicing dancing in their play). This time I decided to go along with her wishes and not fight even the tinies of battles. It is like arguing with a volcano.
Another steroid fit happened just because it had to happen. Julia had a great mood all day (which in itself is very rare on steroids), went to school and then played with her best friend Samantha and her new kittens. Finally when we got home, she had to vent whatever frustrations she accumulated during the day. Since I was not giving her any reasons to be mad at me (i.e. went along with her, did not argue, did not even risk talking for the most part HA HA). Just before bed, Julia was sitting in front of her pajama drawer and was taking 20 minutes to select her pajamas. She kept glancing at me, checking if I blow up and yell at her to just put ANY pajamas on. But I was just sitting there, pretending that I could spend all night watching her check out her pajamas. Eventually Julia decided that she did not need any reason to be mad. She calmly opened her underware drawer and threw all her underwear and socks up to the ceiling. It took her three handfuls to throw all that stuff up! It was such a sight - flying underware, landing on the lamp and shelves and bicycles! Meanwhile I was sitting there like a buddha (believe me it took all I've got to sit like that and pretend that I enjoy watching the show). But Julia was not satisfied with this. She picked up one of her favorite pajama tops and cut it up with scissors into shreds. Again, I did not say anything, just picked up that shredded top and put it on a high shelf, intending to give it to her when she grwos up as a birthday present. It seemed that it was all that Julia needed to satisfy her need for a tantrum, so she proceeded putting on a dress (OK, we were choosing pajamas, remember?) and going to bed wearing the dress. Whatever. Other than those two minor and even funny episodes, we survived last week pretty well.
On Saturday Julia had acupuncture because finally Tuan (her favorite doctor, the only one that can insert needles into her) was there. I told him about the dare situation with Julia's counts but he could see it himself. He gave me moxa (herbal sticks that can be attached to points like stickers and burned) and drew points on her legs and back where to attach moxa. This moxibustion technique allows to raise the blood counts dramatically. I really hope that it worked. We are going back to have counts done on Friday.
We also had another reiki/cranio session this Monday with Tom and John. They were sending us reiki last week too which I am sure helped Julia to stay relatively happy on steroids.

Soon we will be leaving on our wish trip to NYC. The tentative date is on June 12. I chose this date because the girls will have a break between school and summer camp that week and also because Julia would be off steroids for almost 4 weeks by then. I really hope that she is feeling good and has good counts when we go there and will be able to enjoy the adventures.

Thanks everyone for checking on us.

Lola

May 11, 2004 6 p.m.

Hello everyone,

I am just updaing with Julia's counts, thankfully they are stable and some are better, but ANC is still way too low.

WBC 1.59K
HGB 10.1
Platelets 206K
ANC 170

Yesterday Julia had a nice reiki/cranio session with John, but today she refused to get on the table. I think she just is frustrated with all the medical attention around her. She is feeling pretty good, but is a little cranky. Steroids just started - fun.

Thanks for checking up on us.
Lola
--------------------------
Sunday, May 9, 2004 2:19 PM CDT
Hello everyone,
We have (are having) quite a weekend here. It all started on Friday when Julia woke up with fever. She had been having cold symptoms for a couple of weeks prior to that, so it was not very surprising. Her ANC was only 330 on Tuesday and I was anxious to get her to the hospital hoping that maybe her ANC was up some since Julia has been off all oral chemo since last Tuesday (about 10-11 days ago). Her fever was only 100.2 underarm before we left. By the time we got to the hospital it was only 100.2 orally. Unfortunately Julia's counts were very low, with ANC of 0 (yes, ZERO ). She was immediately put on IV antibiotics and admitted. Since we were in Shady Grove, we had to get an ambulance ride to the Children's Hospital. All the doctors had this panicky expressions on their faces which I did not like at all. Meanwhile Julia's fever continued to subside and disappeared by the end of Friday. By the way, the doctor in the ER also told us that one of her ears looks infected. Lungs were clear.

For 2 days Julia has been getting 2 kinds of IV antibiotics to cover all bases - Vancomycin and Ceftez (sp?). Fortunately we got good nurses and lab techs and all 5 sticks that she had were nearly painless except for the one when they inserted her IV line. It stayed in her hand for the entire time. The fever never returned and we were allowed to go home today. However, Julia's counts did not improve much. WBC went from 1.33 on Thursday to 2.66 Today, but ANC only came up to 83 yesterday and was 70 today. Thankfully Julia does not have her central line. If she still did, we would have stayed in the hospital until her ANC is 250.

All doctors (including Dr. Reaman who spoke to me twice) think the fever and counts crash were caused by a viral infection. The blood cultures came back negative. If Julia did have a true bacterial ear infection, the IV antibiotics took care of it. Throughout the whole time, she felt pretty good and we acquired 6 new dolls from the hospital gift shop (Julia got generous at the end and bought one doll for Leah, one out of 6).

Today her counts were
WBC 2.66
HGB 10
Platelets 114K
ANC 70

She also has a ton of monocytes (the numbers were 27 and 17 yesterday and today) which is a good sign and usually means that the ANC will be on the rise shortly. Dr. Reaman was not worried about that, but seemed to like that our scheduled appointment will be on Tuesday, only 2 days from now.

I was pretty down about the whole situation because yesterday May 8 was the anniversary of Julia's diagnosis. It all brought depressing memories of that awful day last year. And I again spent the mother's day at the hospital just like last year. We also met a lot of nurses that were helping us when Julia was in the hospital last year.
I am very grateful that Mark and Cheryl came to the hospital and were silly with Julia. They did it on BOTH days! They really cheered both me and Julia, not to mention that they brought FOOD, not the hospital yucky stuff.

Ok, this is getting long. We are now home and the girls were happy to be reunited. I am keeping my fingers crossed that Julia will continue to feel good and that her counts will come up soon.

Thanks for checking on us
Lola
p.s. HAPPY MOTHER'S DAY TO ALL MOMS!

Tuesday, May 4, 2004 5:16 PM CDT

Hello again,

Julia had her counts checked today and they are not getting any better.
WBC 1.26K
HGB 10.9
HCT 33.1
Platelets 114K
ANC 330

I am not sure what is going with her because her counts were better last week and she has not been taking any chemo since last Wednesday. She still has slight sniffles and a cough, so maybe that's why her counts are not recovering as they should.
Thanks for checking on us.

Lola

Wednesday, April 28, 2004 8:15 PM CDT

hello everyone,

Julia has been having sniffles for about a week and a half. Leah has the same thing and mine lasted for 3 days last week. Otherwise she is feeling fine, has not missed any school, etc. However, her counts are down again so we are off oral chemo AGAIN!

WBC 1.34K
ANC 640
HGB 11
Platelets 167K

I think her allergies are turning into a cold and that could be causing her count to go down. This see-saw with oral chemo is getting a little tiring already. Julia has only been on 75 percent of her oral medication for 2 weeks, before that she was on 50 percent for 2 weeks and before that, she was off everything for about 2 weeks. We were just getting checked to see if we could bump her chemo up, not down. Ever since, Julia started her long term maintenance stage, her counts never stayed within the recommended range for more than a week. We thought that this stage would be so easy because we would go to the clinic once a month, but no... We end up going almost every week and every time, Julia has to get poked in the vein. I am so thankful for our NP Beth who is such a pro at sticking and does not mind doing it, when in fact we are supposed to go to a lab tech for a lab draw.

Other than that, Julia seems to be enjoying life without much worrying about the counts. Today she had a play date with Niko, her friend from school. I never thought that she and Leah would have so much fun playing with a boy! He is so cute and such a nice kid. He and Julia "decorated" our master bedroom with beeds and stickers - and were very surprised when I told them to take the stickers off :)

Leah also cracked me up today. I was driving the girls to school when suddenly Leah started crying almost hysterically. After I asked her, what's wrong. She said, sobbing, "Mom, when I am going to be this old (holding all ten fingers up), where am I going to live? I am not going to fit into our apartment (sob, sob)." All of that was said with much tears and straight face... (for the record, the apartment is not that small, 1800 sq ft :-))

Lola

Wednesday, April 14, 2004 9:18 AM CDT

Hello everone,

Sorry for a big break in updating. Julia had her BIG clinic appointment yesterday that included a checkup, IV Vincristine, spinal tap and IT Methotrexate, and a blood test.
Julia's counts are still holding, so her oral medications are increased to 75 percent of her normal dose.

WBC 3.1K
HGB 10.2
HCT 31.4
Platelets 214K
ANC 1640

We will be going back to the clinic for another count check in 2 weeks.

At the moment, Julia is back to steroids, today is day 2. We already had an argument this morning about what she wants for breakfast that went like this.

Julia: I want something.
Me: Do you know what it is?
Julia: Sure, something.
Me: Tell me what it is? Come on. Is it pickle, oatmeal, chocolate, strawberries, ham, cereal, etc. etc. (repeat 100 times)
Julia: (shaking her head No to each item listed)
Me: (intensifying voice volume) If you don't tell me right now, you are going to school hungry.
Julia: I just want something.
Me: Tell me right now (in scary voice) or you'll be sorry later.
Leah: Mama, I am scared of you.
Me: Good, so Julia, what is it?
Julia: It starts with a "C."

Anyway, we played this game about what letter it starts with, what color it is, is it in the fridge or in the pantry, etc. for about 20 minutes, after which I was starting to shake and get covered with red spots. Eventually we figured out that she wanted baked pita chips. At this point, I was ready to feed anything but rat poison if that would make her happy. Then we repeated the same lovely conversation (slightly modified) about what she wants to wear today. Lovely steroids...and this is just day 2. I just shudder to think of the next week...
Now I am feeling like patting myself on the back for thinking ahead and scheduling TWO acupuncture sessions this week. She would really need them. Our fridge is also stocked full of "steroid favorites" like pickles, feta cheese and other yucky yummies. Danik can't find anything in there because it is so full, but it makes me feel prepared.

Honestly this is very small stuff. I am just very happy that Julia is feeling good and the life is not as crazy as it could have been.
---------------
This time I am especially grateful for the fact that Julia's spinal fluid is clear and normal. The reason is this. There is an 8 year old Christopher, Julia's friend from our clinic, who was diagnosed with high risk leukemia a few months before Julia. He started maintenance chemotherapy along with Julia and his hair started to grow back. I just learned the worst news - Christopher's leukemia returned - the leukemia cells were found in his spinal fluid during a routine spinal on Monday. His website is www.caringbridge.org/md/chrismelko. His family is devastated. When leukemia comes back, it is a lot harder to treat, and the treatment options are limited to drastic measures like Bone Marrow Transplant. This is a brutal treatment, much more brutal than chemo alone. There is another thing that bothers me deeply. We just saw Christopher and his family in DC while picking up our Egg Roll tickets (we ended up not going to the Egg Roll because of the rain). Julia was chasing Christopher and they laughed and played like two healthy kids. There was no warning sign to show that something is wrong.
-------------

Lola

April 2nd, 2004

Thankfully (joy!) julia's counts are in the normal range, well even for a healthy person!

ANC 3020
WBC 4.6K
Hemoglobin 11
Hematocrit 34
Platelets 240K

She is going to be on 50f chemo and then her counts will be rechecked to see if chemo can be increased. Everything else is quiet. The girls will have a spring break next week, which won't leave me much time for updating. Hoping for an uneventful week :)

Julia is feeling good now!

Lola
-----------------------------------
March 30, 2004
Hello all,

Updating Julia's counts. Her ANC is still low to continue chemo, but seems like it's recovering.

WBC 2.8K
ANC 640
HGB 10.6
Platelets 254K

Monocytes 17.5 (if above 10, usually means that ANC is on the rise)

Julia has been feeling good, but seems to tire easily and seems to need more sleep. I think her body has been through a lot, has been hit by lots of chemo and needs rest from time to time.

We go back to the clinic on Friday for another blood test. Chemo is held until ANC is over 1000.

Thanks for checking on us
Lola
-----------------
Sunday, March 28, 2004 10:19 AM CST

Quick update, again!

Julia is feeling much better, with the exception of slight sniffles, but it is not bad at all. She is enjoying a break from all chemotherapy at least until Tuesday. If her counts come up, she will probably be taking 50 percent of her oral meds for a week or two. Since a viral infection can depress bone marrow, her counts may be on their way down instead of up. But sometimes it does not happen, so we'll just have to wait till Wednesday.

All of our grandparents abandoned us this weekend. Nelli and Alik are in Italy, enjoying their vacation and Babulya Valya is in Houston, attending their friends' daughter wedding. The kids are driving us crazy, and we cannot wait for our dear parents to come back and help us on the weekend :)

Other than that, everything is quiet. Will write more if anything happens (hopefully not!).

Thanks for your notes
Lola

Tuesday, March 23, 2004 11:51 AM CST

Update 3/24/04.

Julia had a reiki/cranio session followed by acupuncture yesterday. This was the same day that we went to the ER. Did we beat some kind of record for medical appointments per day? She felt really good after that, her virus seems to be going away. She is not on chemo at the moment and I hope her body will recover soon.
The reason I am adding this update is that Julia has her VERY FIRST LOOSE TOOTH! Yeah, I know she is a late bloomer, but we are so excited for finally see this little tooth moving. She can't stop touching it.

Thanks for your well wishes and notes in the guestbook.

Love
Lola
-----------
Another quick note.

Julia started running a high fever overnight (up to 102F underarm) and threw up. I had to take her to the emergency room to check her counts. Thankfully, her ANC is above 500 and we were allowed to go home. Her blood is being tested for cultures.

WBC 1.1K
HGB 10.3
Platelets 200K
HCT 29.9
ANC 616

I am very relieved that her ANC is above 500 and we did not have to be admitted! THankfully this is getting a little tiring lately. Julia is sleeping now, but her fever seems to be going down on its own. She probably caught Leah's bug, except Leah threw up without fever (or maybe some low grade fever). I cannot wait for the "cold" season to stop and for Julia to enjoy feeling good.

Her counts are still too low for chemo because ANC needs to be at least 1000. Hopefully this new cold would not shut down her bone marrow like it happened in December and they will continue to climb.

Thanks for reading and for your notes in the guestbook!
Lola

Monday, March 22, 2004 10:27 AM CST

This will be quick update.
Things are a little crazy. Julia just finished her steroids on Saturday 3/19. She had been whiny, clingy, mad, silly and eating non-stop. I hate steroids and their side effects, but they are really effective at destroying leukemia cells.

Second, Julia got another cold - yes a brand new cold! She is very stuffed up and her nose is running, but there is no fever (thankfully) and no other symptoms. She is still under the weather from steroids with a little headache this morning.

Finally, Leah also got sick last week - she had been throwing up since Thursday but seems to have stopped yesterday. I was worried about her but she seems totally fine now.

As you can see there is nothing fun to update. Julia's counts are a real mystery to everyone. She had really low counts last tuesday then she got steroids (they can bump the WBC count, but not ANC all that much), now she got a cold. The viral infection usually makes WBC counts go up at the beginning (platelets and HGB might drop), then go really low after the "fight" is over. I have no idea what is going to happen by Friday. But until then she is not taking any oral chemo!

To make matters worse, the weather here is very cold and miserable (at least it seems to me) and it is very windy. Julia is at home today because of her cold, hanging out with me.

I hope the next update will be more cheery!

Tuesday, March 16, 2004 9:27 PM CST

Hello everyone,

This update is sort of mixed. Julia has been feeling well, energetic and everything, but (there is always a but) I had a nagging feeling that started last week that something is off. Could not put my finger on it. Tom and John also said after reiki that she was really off and unbalanced. Dr.Nguen did not seem very enthusiastic about Julia's blood or qi level on Saturday either. But she seemed completely fine. Today she had a checkup and more Vincristine. The oncologist was very pleased with Julia who gained a few pounds and grew almost 2 centimeters in the last month. But her counts dropped AGAIN.

WBC 0.64K
HGB 9.5
HCT 29.3
Platelets 140K
ANC 210

This is such a roller coaster. I hate when the counts go down because I associate it mentally with you know what. However, the doctor things it is no big deal, happens all the time and "platelets are on the way up, so the rest should follow." (her words) I pray that she is right and that's all there is to it. Oh, her theory is that the counts bottomed out after the virus Julia had recently - about 3 weeks ago. So now Julia is off of all oral chemo excepts steroids (they don't bring WBC down). She still got her IV Vincristine because it does not suppress counts much either. Vinc gives her the dark circles around her eyes and pale face - the panda look. Now she does look pale and tired. And honestly I hate it when this happens.

I am too tired to write more. We go back for counts again next week. Please send us good thoughts/prayers that they will go up.

Thanks
Lola

Monday, March 8, 2004 10:17 AM EST

Hello everyone,

Julia is doing fantastic.
Yesterday she had her birthday party and it was a huge success, judging by how happy Julia was. ***Note: was a lot of hassle for parents, but that's OK.

We rented the party room on the roof of our building. The fun part was that it had glass walls and you could see the sky and everything from the height of the 18th floor! We had a lady entertain the kids with dancing and games for almost an an hour and then the kids had pizza and icecream cake. I think the kids were genuinely having fun. I was a little nervous because we never had a birthday party this big. Julia was very excited, very happy to see her Russian friends, friends from school, relatives and even one girl that we met at the clinic (Clare) who already finished her chemotherapy treatment for leukemia.
Leah was having fun with everyone on the same level!
After the party, some of the kids went to our playground, so the fun continued. Actually Julia kept going like an energizer bunny even after that and went through all her presents which took her at least a couple of hours. I would have been exhausted, but she insisted on making clay sculptures (clay was one of her presents) and reading her new books late into the evening.

I want to thank everybody who came to Julia's party. I think everyone made it except for one girl who is on vacation in FL! Thank so much for celebrating and sharing the fun with us and for all your wonderful presents.

I am so grateful for the way Julia is feeling and that she is enjoying life to the fullest!

Today we are going to the clinic after school because the Lympoma and Leukemia society is making a movie about kids with leukemia. They will be interviewing kids and asking them what they want to be when they grow up. Our nurse practitioner really wanted Julia to come for that because Julia told her several times that she wants to be a nurse. I don't know if this movie is going to be aired on TV or not.

p.s.We have no digital pictures of the party because Danik was taking 35mm pictures. Now you all have to wait just a couple of years before they get developed, printed and scanned!

Lola

Thursday, March 5, 2004

Hello everyone,

Today our Julia turns 6!

HAPPY BIRTHDAY, OUR POWER GIRL!

We are wishing you much happiness, health, strength and many happy birthdays ahead!

We love you :)


Mama, Papa, Leah

p.s. If you are visiting Julia's page today, please leave her a note. She loves reading them :)

p.p.s. I and Danik got an awful cold, just keeping fingers crossed that the kids and especially Julia can stay healthy. It is really bad, with high fever and sore throat/headaches. Really bad timing too. The kids seem fine for now.

Tuesday, March 2, 2004 9:26 AM CST

Quick update. Julia is feeling pretty good, except for a slight cold (we all got it and Danik too which is amazing). There is nothing going on except that Julia is turning 6 this week! Her birthday is March 5.

I am updating mostly because I have new pictures.
Last week Julia had one more acupuncture session and reiki/cranio, no clinic visists - thankfully! Steroids wore off and her mood is great.

Thanks for checking on us.

Lola

Monday, February 23, 2004 9:16 PM CST

Hello everyone,

A quick update. Last week was pretty tough with the ER visit and steroids, etc. Apparently Julia did not even need her Rocephin injection that she got in the hospital. The doctors in the ER or the oncologist on call did not account for the fact that Julia is in the long term maintenance phase and does not need antibiotics for fevers if she has good counts. Oh well... at least they did not give her the second injection to complete the course, since it was not necessary.

Julia's steroid pulse seemed worse this week. Her steroid dose was adjusted because she grew/gained weight since the last time. But the small change in dose affected her greatly. She was irritable, miserable, hungry and tired. Thankfully it is over.

By the way, as soon as she learned how to swallow capsules, she promptly forgot how to do it and now we are back to the old grind and mix in ice cream method. I am so tired of mixing medicine and making her take it.

On the good side, Julia had another great Reiki/cranio session with Tom and John (for those reading this journal for the first time, go to www.wholebodyconcepts.com to read more about these awesome people). It went fine and unlike the last time, Julia was eager to get on the table and get the treatment. According to Tom, she really needed Reiki this time, 3 of her chakras were off/slow and John felt a lot of fear in her chest. As amazing as it sounds, I am now used to her feeling great and wonderful after Reiki sessions and this time was again wonderful. Reiki/cranio affects Julia most when she is on steroids. In fact, steroids is the only medicine that has obvious side effects on her (moodiness, cravings, PMS times 10, tiredness) counting hair loss from other chemo.

Tom and John, I am just so grateful for your gift.

Also acupuncture on Saturday really hit the spot (pun intented). The needles produces bright pink areas almost immediately and this is always a good sign of the point working well. Thankfully, kids are so amazing and they respond to gentle healing modalities so nicely.

Now on to another edition of "What Julia said lately..." (sorry if it sounds like a bad case of showing off how smart she really is, but she is!).
---------------------------------------------
Today I was driving with kid and gave money to a homeless person at the intersection. Julia said:

-How much did you give him?
-One dollar.
-Hmm... That is good enough, mom! (looking at me with approval)
-Good? Well, why do you think that?
-Because he can buy any thing he wants at the Dollar Store! (expression on face: duh mom!)

A few seconds later, talking to herself: "The homeless people are those people who like to draw on little pieces of cardboard instead of paper."
--------------------------------------------
Julia did not want to live the apartment to go pick up Leah (was too busy writing her e-mail to Cheryl).
I said:
-Julia, let's go, we'll be late.
-Mom, why don't you go by yourself and let me stay home. You told me you stayed home alone at this age back in Russia.
-Well, this is America, and if I leave you home alone, I can be arrested for this.
-So why are rules different in America? This is still planet Earth, right?
- :)

Lola

Wednesday, February 19, 2004 8:35 PM EST

Update 2/19/04:

OK, I knew it was coming... Julia started running a fever this morning and of course, we had to go the ER. I chose to go to the Shady Grove Hospital instead of the DC Childrens in downtown because 1) it is closer, 2) whenever we go there for fever, Julia has good counts and is released home.

Thankfully the same scheme worked today. Julia's ANC was over 4000 which is a great number and she was given Rocephin (IV antibiotic) and sent home. Of course, I am too tired to describes her screams that almost shattered the windows while the male nurse was trying to insert the IV. Eventually he had to call another, more experienced nurse who located her vein quickly. Not too bad, only 2 sticks today. She really hated them though. The nurses there made a big stink about EMLA (numbing cream) that I put on her hands because it is known to constrict the veins somewhat. But we do it at the clinic all the time. Anyway... Julia probably just has a simple cold, she was a little stuffy for a few days already.

Her platelets were 129K but her Hemoglobin is surprisingly nice at 11.7, Hematocrit is 34.3. She is NOT EVEN ANEMIC now, which is great! Julia fell asleep in the car in the way home and seems totally fine now.

I maxed out on hospital visits though. I just cannot stand another ER visit, they are so stressful. Endless waiting, sticks, hassle, etc. then the hospital bills. Very depressing stuff. On the bright side, Julia is OK and that is what matters most.

Later
Lola
Hello everyone,
Time for another update. Julia is feeling pretty good, but I think may be coming with a little cold which she probably picked up from Leah. If that's the same cold, it should not be too bad as Leah did not have any fever and kept going to school (just very light cough and a little stuffed up).

Yesterday Julia had another clinic appointment - checkup and IV push of Vincristine. She did great with the stick and did not even feel any pain. Her counts are good also, but dropped a little since last time, probably because her chemo was increased to 100 percent in the last two weeks and maybe because of the virus.

WBC 2.47K
HGB 10.3
HCT 32.7
Platelets 136K
ANC 2130

Julia also hit another milestone yesterday - she learned how to swallow gelcaps!!! So getting steroids now is a lot easier. Before I had to crush them and mix them up with lots of Ben and Jerry's Chocolate for A Change icecream and then plead with her for 30 minutes to eat that. Decadron is extremely bitter and nasty tasting, so swallowing a cap makes everyone's life much easier.

Other than that, everything is the same. No news is good news.

-----------------------
What Julia said lately....

Julia was making Valentines for her friends. I bought her a package that had cards and stickers (she ended up making her own, but that's another story). I was in the kitchen and Julia came to me and said,

-Mom, I am so glad that we live in the USA.
-???
-Especially I am glad that we don't live in Canada.
-Why?
-Well, look at this package, these cards cost 2.99 in the USA and 3.99 in Canada!

The price tag said
US $2.99
Canada $3.99

Can someone explain to me how to teach currency conversion to a 5 year old???
------------------------

Thanks for checking on us and thanks for your notes in the guestbook.
Lola

Wednesday, February 11, 2004 10:41 AM CST

Hello everyone,

Again I am taking too long to update but that's because everything is quiet and nice lately. Julia has been feeling great. It is now hard to believe that she is battling leukemia and is on chemo (as much as I hate jinxing it by mentioning it here, so knocking on wood). Her cheecks are nice and rose, her energy level is great, she is physically active and all in all she is almost back to her own self. I say almost because she still sometimes gets moody which may be from all the steroids accumulated in her system over the last few months since her diagnosis.

On Monday I drove Julia to Tom and John for another reiki/cranio session and all the way there, she kept saying that she does not need reiki anymore. Of course, I did not take her seriously but by the time we got there, she plainly refused to get on the massage table. No amount of pleading helped and Tom just said that she really does not need it at this point (!!!) Yes, it is possible to be so full of energy. This is actually great, except for a wasted trip.

Since there is nothing medical to update, I will include a couple more of "what Julia said".

-----------------------------------------------
We had an elderly neighbor Harold stop by our apartment. He talked incessantly for a long time about his long dead ancestors who came to America from Russia, bla bla bla. Then Danik asked him about the condo fee in his apartment (they have a condo almost as big as ours). Harold said that he lost his memory after an open heart surgery and lost all memory. He could remember only his childhood up to college years. His short term memory is very bad also, so his wife took over all bills. While Harold was talking, Julia was watching cartoons, but apparently she was listening because at the point when Harold mentioned his short term memory being awful, she turned around and said very loud, "Oh, so you must be just like this fish Dori in Finding Nemo." (for those who did not watch - Dori was a hillarious fish that could not remember anything and accompanied Nemo's father in search for Nemo). I almost died from embarassment, but apparently Harold not only has memory problems, but hearing issues as well.

-------------------------------------------------
Here is another one. It happened a couple of months ago, but I keep rememering and still smiling about it. When Julia started to read, she started reading labels on everything. She made a quick observation and asked me "Why is everything made in China?" I praised her attention skills but did not really answer the question as I was not sure how to explain this to a 5 year old. Later that day Julia proudly showed me her new painting signed, "Handmade in Maryland. love, Julia."

Hope you enjoyed a couple of laughs.

Please wish us a good clinic visit next week as Julia is going to be poked again for blood and to inject Vincristine into her peripheral vein. This always makes me nervous because Vincristine can cause a nasty chemical burn if it leaks out of the vein but this almost never happens in our clinic.

Thanks for your notes in the guestbook.
Lola

Tuesday, February 3, 2004 3:42 PM CST

Hello everyone,

Just a quick update. Today Julia had her blood drawn for counts. Not only was it a great draw - very quick and painless - but Julia's counts are great too. In fact, they have never been this good since she started chemo.

WBC 4.81
HGB 11.2 (!!)
HCT 35.7
Platelets 269K
ANC 3390 (!!)

Of course this is all due to her being only on 50f her chemo dose and all in all she had a great month. I think that acupuncture and reiki had a lot to do with that, plus the fact she was eating really well and eating nutritionally well rounded food. I am very happy about the way she is handling everything so far. If only she can go through the rest of the treatment like this, it would be great.

Today there was no school (again!) thanks to some rain (freezing rain in some parts of the county, but just rain here). Thankfully the sun came out later today and Julia was able to ride her new bike - which is very "fancy" with all girly bells and wistles you can imagine. She immediately rode into a pile of snow head first but then had great fun riding over the fat jog walks.

Thanks for checking on us and thanks for your kind notes in the guestbook.

Lola

Thursday, January 29, 2004 8:53 PM CST

Just a quick update on us.
First of all, Julia has been doing terrific lately. She was extremely feisty and angry on steroids last week which I now know is a good thing. Last month she was so weak and tired (fighting something viral probably plus chemo) that she was not even hungry or angry on steroids. But this time - ohh, beware of steroid girl. Ever since she was sprung from the hospital just before the new year, she regained her ferocious appetite. She is still eating a lot, I think compensating for losing weight in December when she was weak/tired/sick. She has lots and lots of energy now and even has energy to run/play/ride bike after school!

We have had extremely cold/windy/snowy weather this week. I apologize to everyone whose phone calls and e-mails I did not return (you know who you are, wink). The girls were stuck home until today because the school was out. I could not even drive anywhere because Danik took my car (it's 4weel drive) to work. I had no time to do anything because they were bored and we were trying to find things to do. Tried going in the snow but they only lasted less than half hour there. It was just too cold and windy. Finally yesterday (third snow day), I had a brilliant idea of getting Julia's bycicle out of the car trunk where it was sitting since summer, I think, and letting the girls ride it in our long hallways. Wish I had come up with it earlier. The hallways in our condo building are very long, plus we had the advantage of meeting a few neighbors who were eager to talk to the girls. Big adventure.

I have nothing medical to report. Julia will go to the clinic to recheck her counts next week. We are completely in the dark what they are right now. She has been feeling good, but we know that Julia could not care less about her counts and usually her behavior/outlook do not reflect her blood counts. She is currently of 50 percent of her chemo. I hope that she will continue to feel so good and not catch any colds (yeah, wishful thinking) for the rest of her treatment.

Thanks again for writing notes in Julia's guestbook.

Lola

Friday, January 23, 2004 3:34 PM CST

Hello friends,

I got lazy with updating which is a good thing. It usually means that nothing much is happening. This Tuesday Julia had another spinal tap. It actually went pretty well with just Fentanyl, Julia was able to stay still and she was pretty awake through the whole thing. She did not even feel the hollow needle going into her spine all that much - and she only had EMLA on, no lidocaine shot to numb the area.

However, getting a vein to inject Vincristine was a real pain for her. One vein burst almost immediately as soon as her nurse inserted the needle - apparently Julia had so many sticks lately that her veins have holes in them. Then the nurse had to try another hand and had to stick her twice before she found a good spot. Julia was not really happy about this part. She was really cranky and tired for a couple of days after her spinal, but insisted on going to school a day after her spinal and stayed there for the full day. She is taking steroids now - 5 day pulse - which will be over tomorrow and I am glad that it is only 5 days. This medicine makes her very crabby and she has weird food cravings. The oncologist decided not to even bother checking her counts on tuesday because she was anxious to put her back on chemo. Julia is currently on 50 percent of her normal chemo dose - except for steroids, because steroids do not affect blood counts negatively. In a couple of weeks, we will go back to recheck her counts and if they are still good, she will be on 100 percent of her oral chemo meds.
Again Julia had her Reiki healing session with Tom and John. I think it helped her recover from spinal tap faster. Right now she is feeling pretty great despite steroid mood swings and has been in school since Wednesday every day full day.
Oh, and something exciting happened yesterday. Volunteers from MAKE A WISH came over yesterday to ask Julia what her wish was. She was adamant about going to NYC and 'staying in a nice hotel near Central Park' and going to a Broadway musical for kids. The volunteers thought it was a great wish and even added that we should stay at the Plaza -yeah- and maybe even arrange for us to see Annie on Broadway and even meet the actors after the show, not to mention the limo ride. Julia also mentioned that she wanted to go to a zoo in Central Park and ride horse carriages in Manhattan. We hope that her wish would be approved and we would go sometime in May when it is warm, but not too hot and the flu season is over. The volunteers also brought us flowers and gifts for the kids. This was a little strange because Julia was running around and dancing like a wild maniac, not looking like a normal 'make a wish' kid.
Her ears have gotten better and the cold is gone. By the way, antibiotics did nothing for it because her ears looked just as bad on examination during her visit on Tuesday, so her oncologist ruled it a viral infection. Yet another round of antibiotics for nothing, but it is a good thing, that it was not serious of course. better be safe than sorry.
Tomorrow we go back to the acupuncturist and on Monday Julia will have another reiki session with Tom and John and I hope that those 2 things plus her regular supplements will make her feel pretty healthy and happy.
It's still very cold here and I think once we get to the Spring and Summer, it will be a lot more fun for the girls. it is so windy that we almost never go out and i cannot wait to take advantage of our park and swimming pool in our building.

so that's it for now. need to run and mix Julia's steroids in a bunch of chocolate icecream - since that is the only way she would take them. One more day of this torture until the next pulse of steroids in 4 weeks.

and finally, thanks so much for writing in Julia's guestbook. She now figured out how to type and periodically leaves creatively spelled messages for other caringbridge kids.

lola

Friday, January 16, 2004 1:51 PM CST

Hello everyone,

We have some good news and some yucky news, which one do you want to know first?

Ok, let's start with the good one. Julia's counts are finally UP!

WBC 4.03K
HGB 8.9
HCT 28.9
Platelets 199K
ANC 2370

She will be starting the Long Term Maintenance phase next week on Tuesday with a bang - the usual combo Vincristine IV Push, spinal MTX, oral steroids for 5 days, daily 6 mp and oral MTX once a week. This phase will continue into 2005, probably July or August.

Now for the yucky news - Julia's stuffy nose that she had for a few days turned into an ear infection! This just developed this morning when she started screaming that her ear hurts. She was really in pain by the time we got to the clinic. So now she is on nasty tasting Zithromax.

I hope that Dr.Nguen will help her to get over the ear infection tomorrow during her next acupuncture session.

It is extremely cold outside and windy. The kids are stuck indoors now and have been for almost a week. Almost impossible to believe that it got almost to 70F just a couple of weeks ago!

Wish Julia luck with her spinal on Tuesday. She will only be sedated with Fentanyl since she is having paradoxical reactions to Versed. This should be interesting as normally Fentanyl is not enough to knock kids out (even Fentanyl Versed combo did not knock Julia out).

Lola

Monday, January 12, 2004 3:08 PM CST

Hello all,

Julia's chemo was delayed yet another week due to low counts.

WBC 1.85K (up a little from last week)
ANC 270 (finally climbing up)
HCT 22.7
HGB 7.6 (down from 8.3???)
Platelets 154K

I no longer can make any sense of her counts. They are too low for chemo, ANC must be above 1000 and platelets above 100K to start the long term maintenance phase.

Julia could not care less about low counts, she is pretty happy being chemo-free at the moment. She has not had any chemotherapy since December 28 which makes 2 weeks.

I think that her body and her bone marrow specifically are tired at this point and taking a while to recover. I cannot blame her.

Thanks for checking up on us!
Lola

Tuesday, January 6, 2004 8:50 AM CST

update on january 7, 2004 at 3:30 p.m.
Hi again,

Thanks to yesterday's emergency acupuncture session, everyone's well wishes and mother nature, Julia's counts came up and she does not need a blood transfusions - hoorah!

HGB 8.3 (was 6.9 on Monday! thanks Dr.Nguen (the acupuncturist)!)
Platelets 143K (up from 108)
White Blood Count 1.15K (still low)
ANC 92 (very very low, but hopefully coming up???)

Julia endured 3 pokes today to get her blood as the lab tech did not put the hotpack on her (which usually helps) and EMLA (the local numbing cream) did not work on one side. I cannot believe our bad luck with Broviac removal timing. Usually kids at this point in treatment get poked once a month, not almost daily like Julia. I hope that her blood counts will come and stay consistent for the rest of the treatment (yeh, right).

Julia is feeling great. There is no school today so girls are playing dressup and driving me nuts. Life is good.

Lola
Hello everyone,

Julia is feeling pretty good lately, eating like a horse and is in great mood, at least most of the time. However, her counts came in very low.

WBC 1.3K (a little up from 0.53 last week)
Platelets 108K (up from 41k)
ANC 78 (very low)
HGB 6.9 (very low)

Usually kids get blood transfusions if HGB is below 7, but since Julia is feeling pretty good (at least for now), we can wait a little and see if her hemoglobin will rebound on its own. Apparently the nasty cold that landed her in the hospital last week shut down her bone marrow. So far, this is the first time that Julia's counts stayed low for so long, except for when she had very strong chemo.

Today I am taking her to the acupuncturist and will ask him to just work on her blood counts. Tomorrow we are going to the clinic AGAIN for the blood counts, and Julia will get a red blood transfusion if her hemoglobin dropped.

Other than this, life is getting into a routine again now that we are home from the hospital. The kids are in school right now. I am anxiously waiting for the winter (and cold/flu season) to end.

Another edition of what Julia said ------
Yesterday Julia was complaining that my hands were dirty and that I put my germs on her stuff. I explained to her that I washed my hands very well. Julia was not satisfied and told me with authority that "Water cannot make germs go away. Only yucky medicine can make germs go away." Well, apparently she knows better!
Lola

Friday, January 2, 2004 9:22 AM CST

Hello everyone and HAPPY NEW 2004!
Where to begin... As many of you know this was a rotten week for us. We ended up admitted to the hospital with fever that was actually gone by the time we got to the clinic. Unfortunately Julia's count plunged very fast with ANC of only 117, HGB 8.9 and platelets 44K. Everyone including her doctor was surprised because she looked so good and felt OK too by the time we got there. But the rules are that everyone with fever (even if already gone) gets admitted at least for 48 hours. the reason is potential blood infection that needs to be ruled out and the cultures only come back in 48 hours.

It was a nightmarish day because I took Julia and Leah downtown to DC Childrens not even thinking that Julia would be admitted. We arrived there at almost 12 noon and ended waiting for the room until almost 6:30 p.m. The kids were so bored, hungry and tired. We were waiting the longest time for the flu and RSV tests because we were told that if Julia has either flu or RSV, we would go to the different floor, not oncology. However, by the time we got to a room, we learned that there is a flu patient in the room next door and sharing our bathroom. Nice... Also our roommate was a little girl with sickle cells, also running a fever. Is not it great to put someone who is so neutropenic (low counts = zero immune system) in the same room with a feverish patient and share a bathroom with someone who has the flu. I begged them to let us go home, but the rules could not be bended just for us. After all, Julia's main problem was the runny nose and very low counts that plunged even lower. I will not even go into the details of how she was poked to draw blood for counts, to insert her IV, then again for counts two more times. What a great timing to remove her Broviac! We were told that hospitalizations and problems during maintenance are very rare.
The hospital stay was not fun to say the least. On our first night when Julia was sleeping, a nurse came up to me and told me to wake Julia up and take her to another floor for an X-Ray. By the way, Julia did not have a cough and her lungs were completely clear on examination. Apparently these doctors do not even trust themselves and run X-rays for EVERYONE who is admitted, regardless of their examination by stetoscope. I told the nurse to get lost and that I would not be waking Julia up from her much needed sleep for some stupid X-Ray which she did not need. The nurse looked surprised and went to talk to the resident. Eventually the doctor came back and started begging me to agree to the X-Ray and again I told them that I am not waking Julia up for that (this was after midnight already). What was the urgency anyway? Eventually they arranged for X-Ray to come to US! The tech and the machine appeared around 3 a.m. and took an X-Ray without even really waking Julia up and this was the cool part. Needless to say, it came back clear. Of course, another tech with an X-Ray machine showed up later in the morning and tried to take another X-Ray. It took me a long time to convince him that it was done already. How messed up is that?
Also Julia received six doses of IV broad spectrum antibiotics, also completely unnecessary. I understand that the doctors are covering all bases (and their butts), but I am still angry about this. Oh, and the nurse showed up AFTER Julia's cultures came back negative with yet ANOTHER dose of IV antibiotics and was getting ready to shoot them up Julia's vein. I had to intervene and told her that Julia did not need anymore. The nurse was like, well, nobody told me NOT to give it. Apparently the resident forgot to tell her that Julia's cultures came back already and there was no need for more antibiotics. Of couse, this is a minor mistake (oh well, there are two, she would have had 2 unnecessary x-rays if I did not stop them also), but kind of makes you wonder...
Julia's HGB dropped to 6.4 during the second night and WBC to 0.57, so the attending physician ordered another CBC because it was drawn from her vein, rather than from her IV because he thought that this dramatic HGB drop was due to her blood being diluted by saline sitting in her IV. The second CBC done during the day came back with roughly the same readings for all counts but HGB was 7.2, so we avoided a blood transfusion (they transfuse at 7.0). We came home around 6:30 p.m. on New Year's Eve and am I glad we did not have to spend the New Year's Eve in the hospital!
The doctors think that Julia's count crash was caused by a viral infection that shut down her bone marrow. Of course, I was very nervous hearling those numbers drop so much because they also dropped when Julia was diagnosed with leukemia in May. But nobody thought it was a big deal, so we are just waiting for counts to come up.
Julia did great and was hanging out in the hospital, watching cartoons, playing games with me, playing with Mark and Cheryl who came to visit. Well, Cheryl spent the whole day there on Tuesday, because she just could not leave Julia's little roommate Sylvia, the girl with sickle cell. Sylvia is not even 2 years old and her poor mother had to run home because Sylvia's twin also has sickle cell and there are 2 more little kids at home. So Cheryl spent the whole day rocking little Sylvia and playing with her. Sylvia's mom was very happy that Cheryl was there with her girl. I was afraid to rock her because Sylvia was running a fever and I did not want to give her infection to Julia. This was tough, but we did our best to talk to her and cheer her up if there were no other volunteers or nurses to hold her.
Right now I have no idea what Julia's counts are. Her chemo is on hold until ANC is 1000 and platelets 100K. But Julia is feeling pretty good, eating a lot and is in good mood. She still seems somewhat tired, sleeping 12 hours every night, but she looks great.
One thing that I learned from all of this is that you can never guess the Hemoglobin by just looking at her. She had the reddest lips and when I pulled down her lower eyelids, there was plenty of pink there. Her gums and tongue were almost red too! But Hemoglobin was almost on the level where she would need a blood transfusion. On the other day when she had gray lips, her hemoglobin was almost in the normal range.
All in all, this was a fun (NOT) week. According to the yin and yang theory, the things should start looking better now (as they had been pretty bad so far). All we want is some normality and predictability right now.

Here is another edition of "You know what Julia said?"
The clowns came to cheer kids up on Wednesday. They did make her laugh a lot. One of them picked up Julia's ballerina toy and pointed to her tutu and said, "Julia, what is this called? One-one? three-three?" and then the other clown went like "Four-four? Seven-seven?" They kept looking at Julia waiting for her to say, No, it is tutu (two-two). But Julia (who was laughing the whole time time) eventually said, "OK, OK, I get it now" with an exasperating sigh. The clowns almost died laughing.

Hopefully this year will be better than 2003!
Lola

Sunday, December 28, 2003 8:26 PM CST

Well, as soon as I posted something good, things turned around again. Will this ever stop? Julia started a little cold about 3 days ago which turned into a big nasty cold with a very runny nose and some fever. The fever spiked during the night and she was still feverish on and off today. I decided to not call the oncologists because they would have ordered her to go to the hospital to do the cultures where she would pick something like a real flu. So we decided to take the wait and see approach. She does not even have a cough, just a big runny nose and a lot of congestion.
Since Julia no longer has the Broviac, I feel a lot better about the fevers now. With the Broviac we had to rule out a blood infection with each fever. I just hope that the cold will not last too long and she will not develop any complications.
Otherwise things are OK. We are taking it easy, off from school, seeing lots of people in our new condo and domesticating... (domesticating??? oh well - going to Ikea and such).
We love the condo so far, it is the nicest coziest thing in the world.

Yesterday we had another acupuncture visit. Julia's jaw was hurting all day yesterday, probably from Vincristine (chemo she got last week has this side effect). I mentioned this to Dr.Nguen. He double-checked that her lymph node is not enlarged on that side and then inserted a needle right into her cheeck. She did not even flinch and the pain was gone almost immediately. It really worked like magic. Dr.Nguen thinks that Julia has a great response to acupuncture in general.

I think I am going to add a category called "You know what Julia said..." Today's edition of "You know what Julia said..." is below:

We bought Julia a very bright lamp for her craft table. She kept telling us to take that lamp away, that she already has too many lights, etc. until Cheryl said, "Why don't you like this one?" and Julia replied, "It is so bright, I need to wear sunglasses in my room now."

Another one of her favorite sayings now is "You hurted my feelings" (yes, hurted). Usually she uses this one whenever she wants us to shut up. For example, I told her this morning to use a tissue to wipe her nose, and she told me very sternly that I "hurted" her feelings and needed to apologize to her.
---
So that's it now. Please send Julia some "get well" vibes.
Lola

Tuesday, December 23, 2003 12:27 AM CST

Hello all,

Finally things turned around and Julia started feeling like herself again today. She was really down and tired after her last spinal/surgery to remove the Broviac catheter. I think the general anesthesia was just not good for her. We had not seen Julia so tired and down for the longest time, even on bad chemo!

Acupuncture helped her recover a great deal (we had 2 sessions last week) and today she had another great Reiki/Cranio session with Tom and John. I was so glad to hear that Tom still has the feeling that Julia is going to be just fine. But normal bumps on the road are to be expected.

Yesterday we had a "party" at our clinic with a few kids that we met there - Clare, Christopher and Sharon. Julia had a great time and Leah was playing/making crafts along with the big kids too. Julia looked like a ghost(very pale) yesterday even compared to other kids with leukemia that I asked for a count check. Her counts really surprised me in a good way. I thought her HGB was so low that she might need a transfusion but instead it is pretty high! Take a look:

WBC 2.98K
Platelets 108K (a little down, but our NP Beth explicitely told me not to worry about the platelets as they are sensitive to a lot of things)
HGB 10.9!
Hematocrit 34.0
ANC 2450
So as you can see everything is up except for Platelets. I think that Julia had a stomach bug in addition to everything else that was going on last week.

Also re: protocel. I ordered a batch and am going to try it on myself for some time to see how it makes ME feel. I think this stuff cannot hurt Julia, but will do a little more soul searching about it before I make the decision whether to give it to her or not.

We are off from school until January 5th and thankfully the weather is good so far. So we'll take advantage of it while it lasts.

Gotta go - have another acupuncture appointment soon. Thanks for your notes.

Lola

Wednesday, December 17, 2003 8:35 PM CST

Julia is free from Broviac!

This is the highlight of this week :) Julia had a surgery to remove the Broviac catheter (the thin tube that was going into her chest vein to administer drugs and draw blood) yesterday. She will be going into long term maintenance which means that she will only need blood drawn and medicine in her IV only once every 4 weeks.

She did very well during the surgery which lasted maybe 20 minutes. While she was under, Dr.A gave her a spinal tap and nurse Beth gave her the second flu shot (booster). So we had a good use of general anesthesia. Julia also received another dose of IV Vincristine yesterday. She woke up very fast too. But she was kind of woozy and tired yesterday and threw up during the night. She is full of chemo now as she also had a pill of 6-mp and 6 methotrexate pills last night. She is still not 100oday and I had to get her home from school early today because she complained of stomach pain. I am taking her for an acupuncture treatment again tomorrow (in addition to our weekly Saturday sessions) to fix the stomach pain/problems.

Her blood counts are

WBC 1.4
ANC 1020
HGB 9.6 (a little up)
Platelets 129K (down, but supposedly platelets are sensitive to a lot of things, so we were told not to worry)

Julia will not have to go back to the clinic for a month! We hope that she will start feeling better soon because she has just not been herself lately. I think she is getting tired of chemo. Her liver enzymes are slightly elevated but Bilirubin is normal, so again we were told that her liver is normal. Something is definitely going on there.

I started looking into Protocel, an alternative to chemo which is completely non-toxic. Many people use it as a last resort with good success, but it can also be used in combination with chemo. I am seriously considering and trying to get more data. Protocel works by making anaerobic cells (such as cancer cells, but also other diseased cells) to self-destruct. This process is called lysing. There are several support groups online for people who are taking it or giving it to their children. I am still doing more research and would appreciate if anyone has more info for me.

Julia will continue on maintenance chemo for about 20 more months and we hope that because it is lower dose chemo, she will pretty good. The thought of systematically poisoning her for this long just makes me sick too, but it is too scary to not do the chemo when her chances with chemo are so good.

Lola

Friday, December 12, 2003 8:46 AM CST

Well, as soon as I wrote that Julia is feeling great, etc. the things started to turn around a little. Nothing major happened, but I just think that she is sick and tired of chemotherapy. Julia has been complaining lately that her tummy hurts and has been extremely cranky. Thankfully she does not have any fever or any other symptoms and most importantly there is no flu in our family.

She is still going to school, but it seems like this is all that she can handle in the day. Yesterday after a playdate (which was right after school and which she thoroughly enjoyed until the last few minutes of it) she was very tired and worn out and had a crying fit that lasted over an hour. She seems to be very tired, but does not get to sleep easily.

I talked to our NP about the tummy aches and she thinks that Julia has taken enough drugs to cause some gastroenteritis (I know I spelled this wrong) and advised to try some antacids like Zantac.

I will write more after our clinic visit on Tuesday when Julia gets her next spinal and her Broviac removed.

Lola
p.s. Thanks for your notes in the guestbook.

Tuesday, December 9, 2003 9:22 AM CST

Hello,

This will be a quick update because nothing is really happening and also because one of my fingers got hit by the balcony door which makes it hard to type!

Julia has been doing great (fingers crossed) and feeling great! We have not had any unscheduled clinic visits and she has been attending school every week day.

ONLY 7 DAYS TILL THE BROVIAC COMES OUT!

I also had a conference with her teacher yesterday. Learned that Julia is one of the best readers in her class among the 5 year olds, and understands new material very fast. She is now doing the division and multiplication, can you believe it? I think we did not get to this level until 2nd or 3rd grade??? And she is only 5, kindergarten age. Her only issue is that she likes to start several projects at once without finishing what she started. I also asked the teacher about the letter flipping. Julia has a habit of flipping all letters that are not symmetrical, when she prints them. When she writes in cursive, she does not have the problem. Apparently a lot of 5 year olds do that, but it is something we should keep an eye on and towards the end of the year, we should start correcting that.

I also noticed that Julia can read mirror images and upside down text. She even told me that it was easier to read upside down (????). But overall, we are very proud of her because the harsh treatment did not affect her learning at all. She actually learned to read very well WHILE she was going through the toughest phases of chemotherapy. She also taught herself to read in Russian. Don't ask me how she did it, she just did. She reads in English much better though and very fast too.

Julia's hair is growing back and now looks like a stylish extremely short haircut (about 3/8 inch long). Her hair is growing back in different color, light ash brown! I have new pictures but unable to get to the computer that has the photo software because its monitor broke. The new hair looks very nice and I have been using Thymuskin shampoo on Julia to make it grow even faster. She cannot wait to have long hair again (can't blame her, so do I).

We are finally somewhat finished with unpacking and are enjoying living maintenance free life! yesterday we put up a small artifical tree and the girls enjoyed decorating it. It is our NEW YEAR TREE and the presents will appear under it on January 1st!

Thanks again to everyone who is thinking of Julia. Also we appreciate your notes in the guestbook. Julia can now read them by herself!

Lola

Sunday, December 4, 2003 11:48 AM EST

Small Update:

Just got Julia's counts from yesterday and they are good.

HGB 9.4
Hematocrit 29.4
Platelets 270K
WBC 2.62
ANC 1720

Lola
Hello all,

Sorry about the long pause in our updates, but we were extremely crazy busy with our move so did not have any free time to write here. Julia has been doing great, with no unscheduled clinic visits or problems (furiously knocking on wood). She and sister Leah started an art class with a Russian teacher and they are really enjoying it.

We moved into our condo on November 24 and the day later we sold our house. What can I say, the condo is amazing. We love it so much and only now realized how right this place is for us. First of all, it is huge, almost 1800 square feet. It has 4 bedrooms, a separate dining room and 2.5 baths. All the space is very functional. Of course, the kitchen and the bathrooms are very old (built in 1965) but they are clean and functional. In the house we had our beuatiful kitchen for a few months (since remodeling) and I can tell everyone honestly that new kitchen is nice, but it does not equal happiness. The girls love their new rooms, as they are bigger than their old bedrooms. Julia's room has 2 huge windows with amazing views from 16th floor that look magical at night (lots of city lights). If we walk out of the back of the building, we are right in the park with a pond and a playground. what more can we ask for? Not to mention that it is right near the Grosvenor metro and now we can go to DC zoo any time we want without parking hassle! We spent the whole week unpacking and just hanging out in this place.

In just a little over 2 weeks, Julia will say goodbye to her Broviac catheter. I cannot believe that this tube is actually getting out. She will have general anesthesia for it and they will do her next spinal tap and the second flu shot while she is out. Until then, we'll probably go back to the clinic to recheck her counts some time this week because her ANC was a little low when we started this round of chemo. We continue with her acupuncture treatments every week.

A great surprise was that melonhead foundation (a charity that helps children with cancer who are also getting holistic/alternative treatments like acupuncture) chose our family to help. They will be paying for the next 10 acupuncture treatments and sending some money to Tom and John (our reiki/massage practitioners who donated their time). Just as we were scratching our heads wondering how to make ends meet with all the expenses, I got that wonderful news. Their web address is melonhead.org and it was founded by Deb Leone who lost her daughter Melanie to leukemia.

Danik's insurance really sucks and pays only 90f the cost of Julia's chemotherapy and procedures and supplies. Thankfully as Julia is heading into the maintenance phase, she will be getting less intense and also less expensive treatments. At least, assuming that nothing unexpected happens as we hope.

Tomorrow Julia and Leah are going back to school and I will have more time for updating and just generally for sorting our life out. Thanks for everyone's messages in the guestbook and of course for thinking of/praying for Julia's smooth road to health.

Lola

Tuesday, November 18, 2003 5:24 PM CST

Hello all,

Counts (the nurse called this evening)

ANC 790 (lower than they wanted it, but OK)
WBC 2.07 (a little down)
HGB 9.3 up!
Platelets 259

Today Julia entered a new phase, again, which is called Interim Maintenance 2 (IM2). It is identical to IM1 that she had during summer and overall she felt very good during that time. It will last 8 weeks (2 4-week cycles). Each 4 week cycle will start with a spinal Methotrexate, Vincristine IV push, 5 days of decadron (steroids), daily 6mp and oral methotrexate each Tuesday. It sounds like a lot of drugs, but the overal toxicity is much less than that of the Delayed Intensification phase.

Julia had a pretty awful spinal today thanks to yet another paradoxical reaction to Versed, her "loopy" medicine used for conscious sedation. Finally even Dr.A acknowledged it and she said there will be no more Versed for Julia. Next time she will be getting only Fentanyl. Julia was a trooper and allowed Beth (our NP) to insert a peripheral IV and practice Vincristine injection. She did super (well both Julia and Beth). I LOVE our nurse practitioner Beth! Julia also got a flu shot while she was "sedated". She screamed through the whole thing and for a while afterwords, but at least she does not remember any of it!

We also had an appointment with Dr. Hartman who will remove Julia's Broviac on Dec. 16, at the same time as her next spinal (to make good use of general anesthesia) and the next flu shot (she needs two within a month).

We also settled without incident on our condo last night, it is being repainted this week! We are very excited!

OK the kids want my attention, gotta go. Thanks for notes in guestbook.

Lola - smoke free for Six Days, 21 Hours and 50 Minutes, 6 Hours added to life, 83 cigarettes not smoked, $10.37 saved.

Friday, November 14, 2003 7:42 AM CST

Hello,

This is a quick update because I have to take the girls to school now. Julia is feeling great, she still has just a touch of cough. Yesterday we spent a looong day at the clinic in DC and her pneumonia was confirmed, but the onc thinks it is probably viral. They are not willing to chance it though and she was given the second Rocephin and is supposed to start an 8 day course of oral antibiotics today. They said they feel a small part of her right lung has more density and looks a little cloudy on X-Ray. I asked them if pneumonia will delay Julia's next phase of chemo, but they told me that since the infection is controlled, she will begin as scheduled.
I will post her counts after I call the clinic today and find out what they are.

Also forgot to mention that Leah had her 3 year old checkup this week. We were concerned about her height, but she turned out to be in the 10 percentile for height (35 1/4 inches tall and 26 lbs) and her weight is somewhere underneath the chart. I and her ped laughed about her being "underweight" because she looks so chubby despite being so lite! She probably has small bones. So she is still growing on the same curve. She was very brave and let them stick her finger to check her Hemoglobin which came back at 11.7 (nice number).

Lola
p.s. I am still smoke free since Wednesday - not a single puff. Wish me luck.

p.p.s. The loan officer is giving us hard time for this loan (many different obstacles with condo appraisal, my employment verification - ha, what employment?, and others) - all of this after the loan was completely approved a month ago. Our settlement is on Monday, so we hope to resolve it by then.

Wednesday, November 12, 2003 8:32 PM CST

OK, this is not fun anymore, can we stop this please?

This is how I feel about leukemia and our life lately. Julia, Leah and I were all having a cold since last Friday. Danik is of course exempt from all colds and mysteriously avoided this one as he did all previous ones.
It looked like the cold was going away (I felt worse than the girls) but today Julia started running high fever (38.6C underarm) and coughing after school. Of course, this meant a trip to the ER. She threw up once we got there, probably from being carsick or fever.
Of course, we spent 4 hours there. At least, they let us go home. Julia's counts recovered somewhat from DI and her WBC is 2.3 with ANC of 1200 or 1300, HGB was 8.6 and platelets 265K. All counts are up and most importantly ANC was above 1000, so after getting a shot of Rocephin (antibiotic), we were sent home.

Julia was so tired that she fell asleep in the car on the way home (around 9p.m.) and is now sleeping. Tomorrow we are going back to the clinic - of course, it has to be Thursday, the only day of the week that the outpatient center in Rockville is closed - in Washington, DC which means 1 hour drive each way, urgg.

I personally have a horrible scratchy throat and a cold too. But at least one positive thing happened to me. I decided to quit smoking because my colds are so long and because smoking just clashes with my outlook lately. I decided to go cold turkey, so wish me luck. It has been exactly 24 hours since my last cigarette and I crave to smoke just one, but will not do it. Will not take one more puff (I hope I can stick to it or I will be ashamed).

Lola

Friday, November 7, 2003 10:07 PM CST

Today's clinic visit was a breeze - I appreciate everyone's wishes,
thoughts and prayers, they must have helped :). I put EMLA on Julia's
hands and made her drink water before the appointment. The "one shot Beth"
totally fits her nickname - she got Julia's vein on the first try and
Julia (who was somewhat apprehensive about the whole deal) did not even
have time to flinch. We are going to do a couple more practice runs
with Vincristine before removing the Broviac.

By the way her counts are still too low to start IM2 with ANC only 540,
HGB 7.8, platelets 128K and WBC 1.3. So we still have to wait another
week before starting IM2. Both I and Leah (Julia's 3 yo sister) have
some kind of virus with scratchy throats and stuffy nose and I just hope
that Julia can avoid catching it (which she did so far, knock on wood).

Our brilliant nurse practitioner Beth is great not just because she is
"one shot Beth", but also because she was the one who also had a great
idea to give Julia her flu shot at the same time as her next spinal, to
minimize the trauma! I just love her. She is also the kind of nurse who
went out and got a dermatologist to look at Julia (with no
appointment!) a couple of weeks ago because Julia had some strange looking rash.
The dermatologist thought it was insect bites. This time Julia got new
rash, which looks like small thick raised bumps filled with clear fluid,
but thicker. They are not at all itchy and the distributition does not
fit the chicken pox either. The NP was perplexed by the rash and talked
to a specialist on the phone who was equally baffled. Julia got
clusters on her lower legs, some around her waist and some tiny versions of
these on her cheecks and back of hear (just barely visible but from the
same category). They are obvious but do not look very sinister just
strange. Has anyone had experience with those? If it gets worse over
the weekend, we might end up seeing a dermatologist again. Leah does not
have those, but she did have the insect bites last time just like
Julia.

Also Beth was nice enough to read Julia's chart with me and I found out
that Julia's bone marrow was 89% packed at dx and that our protocol is
actually called COG 1991, not CCG 1991 as apparently all CCG and POG
protocols are merged and no longer being used (although there are many
kids newly dx on this list who are on them???). In any case COG 1991 is
exactly the same as CCG 1991 and the roadmap the hospital gave me says
CCG 1991, so that is why I never knew. Go figure.

Lola

Wednesday, November 5, 2003 10:27 AM CST

Hello friends and family,

This is just a quick update on Julia. She has not had any chemo since for over a week and her last ARA-C infusion was almost 2 weeks ago. She stayed really pink and healthy looking after her blood transfusion for about a week and slowly the color disappeared from her cheecks. Since we did not have her counts done for a while, we do not know what her numbers are, but definitely the counts must be down thanks to nasty ARA-C (strong chemo). I was almost ready to take her for a checkup this Monday because she started looking very pale and new dark bruises showed up on her legs (a sign of low platelets), but then decided to wait and see. Julia had 2 acupuncture treatments within the last few days and surely she started pinking up again and the bruises are slowly fading. So I am hoping that her counts are on the way to recovery. This Friday we are going to the clinic to see how her counts are and if she makes counts (ANC above 1000 and platelets above 100K), she will start interim maintenance number 2 on Monday.
She has been feeling great despite all of that. I think that her supplements make a big difference in the level of energy that she has. She has not missed school at all except for long clinic days and was able to enjoy being around friends and play.
A lot of kids start to feel really fatigued and sick and have blood transfusions around this time in treatment because their bodies are so beaten by the harsh drugs. However, we have not seen that yet and hope that Julia continues to stay "healthy" and energetic. When she is off chemo for a week or two, she really feels great, but unfortunately we cannot just take her off treatment until it is over, which will continue for about 21 more months.

On November 18th, we are having a consultation with the surgeon who will remove Julia's Broviac catheter. I think it will be a huge milestone indicating that we are done with the hardest part of the treatment.

Julia's new hair is starting to grow back like a fuzz that is still barely visible. The new hairs are so thin and transparent that the fuzz is almost invisible, but it is there. It started growing even before she was done with ARA-C and I do not know if it will fall out before the new hair completely takes over.

Please continue to send Julia positive thoughts and prayers. Also please sign a guestbook so you know you visited her page, she loves your notes.

Lola
p.s. We are having a settlement on the condo on Nov. 17 and move in on Nov. 24. The house settlement is Nov. 25. Wish us luck that the settlements will go smoothly.

Tuesday, October 28, 2003 9:56 AM CST

Hello all,

We finally made it to the end of Delayed Intensification. I must say that it was a hard couple of months but Julia handled it very well, considering. Right now she is feeling very well physically and has a lot of energy. In fact, yesterday it was raining so we could not go outside, she was jumping all over the living room couches and ran around like a wild maniac. Leah could hardly keep up with her. I think the red blood transfusion she got last week certainly helps her to maintain the high energy level.

Julia started eating much better too after we stopped the ARA-C infusions. She only threw up once during this phase and that was because I made her take the yucky medicine when she was not feeling well. The taste was too much for her.
Thankfully she was doing very well taking her supplements lately. I learned that tinctures (liquid extracts) work much better than capsules. So I had to give up my beloved supplement ImmPower (AHCC) made from mushroom hybrid. To compensate Julia is taking 3 new mushroom supplements (Host Defense mushroom Blend, Seven mushroom blend and Maitake Beta-Factor). I also give her Milk Thistle tincture, Sea Silver, Glutamine powder, Probiotics Powder, Elderberry+vit. C every day. Knock on wood, but she does not complain about the taste of those. Thankfully all of the above tinctures and powders have very mild taste except for SeaSilver which tastes like cranberry juice and Elderberry that also tastes like berry juice. I add some really sour concentrated Cranberry juice and/or Pomegranate juice and she just drinks it from the cup. Julia loves sour taste and can eat lemons straight!
I have also been giving her a kid gummy bear multivitamin (different brands to make it interesting) and today I started again on liquid Cal+Mag+Zinc because I think she might be low on minerals. I hope that she continues to take the supplements without much struggle and maybe even learn to swallow pills one day! This would make my life so much easier. We are also continuing with weekly acupuncture and Reiki sessions.

The only problem lately is that Julia becomes irritable, cranky and even angry. Too much is going on her life that should not be happening in the 5 year old kid's life. So I can understand her anger. It comes and goes. Yesterday she was practicing her new skill - division - and became so angry that she started biting into her notepad and tried to lift some boxes with books (we already started packing for the move). Then she became mellow again. I am glad that she is able to vent her frustrations instead of keeping them inside though.

Julia will be enjoying a break from chemo until at least November 7th. If she makes counts (ANC 1000 and platelets 100K), she will start Interim Maintenance 2. It is identical to IM1 she had during summer. It will last 8 weeks (2 4 week cycles). Each cycle begins with a spinal Methotrexate, 1 IV push of Vincristine, 5 day steroid pulse, oral 6-mp every day and oral methotrexate once a week. After 8 weeks, Julia will start Long Term Maintenance which is very similar to Interim Maintenance except her spinal taps will be every 12 weeks instead of every 4 weeks adn the rest of the medications are the same.

There is no way to tell how it will go, but Julia was doing great over summer, so we are hoping for the same this time. Of course, the fall is here and winter is coming along with the flu and other viruses. We will try to avoid going into malls and other public places unless absolutely necessary to avoid the exposure.

Julia's nurse Beth came to school last Friday and did a presentation for the 5 year olds about leukemia. She showed them the Why, Charlie Brown, Why? cartoon about a girl with leukemia and then they had a question/answer session. It went very well and Julia even got up to talk and showed everyone her Broviac catheter. She was very happy that Beth came to school and very proud of all the attention that she received.

For those wondering about the house - we are having our settlement on November 24. The settlement for the condo is November 17, Danik's birthday (by the way, mine is Nov. 22). So between his and my birthday we'd buy the condo and sell the house :) We cannot wait to move and are very excited about our new place. We are hoping that the move will help us literally move into a better phase of our lives.

Please continue to send Julia positive thoughts and prayers!
By the way, she never lost all her hair from the chemo and we now are seeing the new hair sprouting underneath the old longer hair. We cannot wait for it to grow back to see what color and texture it would be (it can come back totally different).

Lola
p.s. I wanted to thank my mom and Alik for throwing a birthday party for Leah. Also thanks to everyone who came and brought wonderful presents. It is nice to have a big family :)

Wednesday, October 22, 2003 9:40 AM CDT

This will be a quick note.

First of all, HAPPY 3rd BIRTHDAY TO LEAH!. Our Leah, Julia's little sister is 3 years old today. She is still our baby, and we cannot believe that she is 3. There is a selebration at school today with cake and candles, and on Saturday, baba Nella is throwing Leah a big party (so we don't have to, LOL).

Second, Julia's counts came back. Her Hemoglobin dropped to 6.7 and she needs a blood transfusion (just red cells). So we'll be heading to DC Childrens later today for a 5 hour or so procedure. Her other counts dropped too since Friday.

WBC 1.68
ANC 1270
Platelets 94 (hope we can avoid a platelet transfusion)
HGB 6.7

Many kids require blood transfusions during the delayed intensification phase, so Julia is not an exception. We are hoping that will the last transfusion as we are ending the DI phase this week (whew).
Please continue to keep Julia in your thoughts and prayers that she will tolerate her treatment well.

Lola

Friday, October 17, 2003 3:09 PM CDT

we had a little setback yesterday. Julia started running a fever last night and it was 38.2C in the morning. I really hated to go to the hospital because I was afraid that she would be admitted for fever and neutropenia (low white blood cell count). After much hesitation we went anyway and I am glad we did. They are now testing her blood to see if anything grows there (bacterial infection). Julia was given one dose of Rocephin (antibiotic) and luckily her WBC count is huge so we were sent home. I don't remember all counts but WBC is 7.9K (normal range) with 93% netrophils, so her ANC must be around 7500, above the normal range! Her hemoglobin dropped to 8.8 and the platelets are 166K.

Julia's nurse gave her another antibiotic dose today while we are still awaiting the result of her blood cultures. It is possible that ARA-C, a chemo drug, causes the fever, but we can't be too cautious! The infection in the blood can spread quickly if untreated. Julia's high ANC may be a sign that she is fighting something either viral or bacterial or just a sign of her bone marrow compensating for the chemo. The meds she got this week are just kicking in and her ANC will drop down very low again.

Other than that Julia is not feeling too bad, even running around and playing, but refusing to eat almost anything. The only thing she eats now are strawberries, blackberries, tomatoes, crackers and hibiscus tea. This is fine because she seems to be drinking a lot.

Today we again had a very good time playing in Rio, feeding the ducks and running around. Later we are going to the music/theater class, taking advantage of Julia's good mood and high ANC (if it is still high). She is not running a fever since yesterday.

Thank you for the notes in the guestbook. Please continue to keep Julia in your thoughts and prayers.

Lola

Wednesday, October 15, 2003 10:05 AM CDT

Hello all,
Yesterday we had the longest day at the clinic from 8:45 until 4:30. Julia was getting Cytoxan that requires pre-hydration and Messna (to help clear out the breakdown of the Cytoxan). She also received a spinal tap with intrathecal methotrexate and a new drug ARA-C in her IV. She did great yesterday, was in a good mood and had energy to sing and dance after that. I think she got hot during the night (a possible reaction to ARA-C), but did not seem to have any fever in the morning. I let her go to school since she was feeling good.
She also is getting Zofran around the clock to prevent nausea from Cytoxan and ARA-C.
She will receive ARA-C at home (the nurse taught me how to give it into her Broviac) for 3 more days this week and 4 more doses next week. She is also on oral 6-TG for 14 days.

In two weeks her Delayed Intensification phase will be over and I cannot wait for it to be over. Just hoping and praying that she will not have side effects and fever from these harsh drugs. Her appetite will probably disappear as well as her blood counts during these 2 weeks. After that she will get at least a week break or more depending on her counts before starting Interim Maintenance 2 (same as IM 1 that she had during summer) and go on to the Long Term Maintenance.

Also yesterday she received both Versed and Fentanyl for her spinal anesthesia and did very well with both, being high from Fentanyl for hours after that. She could not believe that spinal was over she was so out of it (although talking through the procedure as usual).

Please send Julia positive thoughts/prayers to help her get through the rest of this phase without complications. It is very hard on her body, but she is strong and we are sure that she will remain in good shape.

Lola

Monday, October 13, 2003 1:49 PM CDT

Hello all,
Julia has been feeling great this past week, thanks to no chemo. we were waiting for her counts to rebound, so she got a break. Today we went to the clinic and her counts are:

ANC 950 (good enough to continue chemo again)
HGB 9.0 (down since last time)
HCT 28.0 (also down)
Platelets 208K (also down a little)

Did not get other counts because again I was driving and got this numbers on the cell phone.

Julia's ANC was supposed to be 1000 to continue her DI, but our nurse practitioner said that 950 is close enough. She did not seem concerned about other counts, but of course, I am wondering why did her HGB and platelets drop? Of course the chemo she got 3 weeks ago is still in her system.

After the clinic, we enjoyed feeding the geese in the Rio park. The weather has been gorgeous around here and I am glad that Julia was feeling good to enjoy it.

Lola

Monday, October 6, 2003 3:03 PM CDT

Hello all,

We had a good weekend and Julia has been feeling very well and having her good mood back. I cannot believe it but she still continues to eat a lot even though she is off of steroids for over a week! She slowed down but is still eating more than usual.

Today we went to the clinic to check her counts to see if she is good to have her spinal tomorrow. I thought for sure that she would be good to go since she was feeling so good, but her ANC is still too low.

Hemoglobin 9.7 (pretty much the same)
Hematocrit 29.3
Platelets 284K (normal)
White Blood Count 2.33K (low)
ANC 140 (very neutropenic, can't fight infection)

On Saturday Julia had her usual acupuncture treatment and I asked Dr.Nguen how long it takes the bone marrow to respond and produce blood cells (both white and red and platelets). He said that there were double-blind placebo controlled studies done on human volunteers and the blood was drawn every 30 minutes. It takes approximately 2 hours for blood counts to come up after an acupuncture treatment. I thought it was amazingly fast. I cannot even imagine what Julia's ANC would have been without the acupuncture, not to mention her other counts like platelets and HGB. I continue to knock on wood furiously and be thankful that she did not have any fever or infection which would have landed us in the hospital. All your good/positive thoughts are helping too.

Thank you all for your notes in the guestbook - Julia asks me to read them every day, so we are always checking for new ones.

Since Julia did not make counts, we'd go for another count check next week or this Friday. Until then, she is taking a break from chemo. Her hair is almost all gone with some fuzz remaining around her head.

THank you Polina and Elik for the Spirited Away and Bugs Life DVD's. Julia loved them both, but I think Spirited Away is her favorite and she wants to watch it every day!

Lola

Thursday, October 2, 2003 9:42 AM CDT

Hello all,
Julia has been a lot better since Monday/Tue night. Her leg pain disappeared completely although she still has a little trouble with her legs, but minor, i.e. cannot run too fast or walk up the stairs without holding on to the rail. Also on Tuesday night she seemed to have a really low grade fever that resolved itself by morning of Wednesday. Although the oncology fellow I spoke to on the phone suggested we go to the hospital if the low grade fever does not go away, I am glad that we did not. I think that the short lived spike in temperature was due to Julia coming off of steroids when she was eating so much, which raised her metabolism, which made the body temperature go up. Also she had some acupuncture done on Tuesday to help her with the immune system and it probably caused some thermal effects also. I will ask Dr.King on Saturday if this assumption is correct.

But other than that, Julia is attending school and in good spirits. Yesterday she and Leah did a whole show of putting on their butterfly Halloween costumes and dancing around the house! Julia was wearing her new long hair wig too.

Her hair is almost completely gone, but looks like soft fuzz around her head, and I can see her sculp clearly.
It was funny yesterday. After she danced in her butterfly costume and wig in front her of her grandma, Julia said, Ok done. She took off her costume, then her wig and danced some more in just underware. She was so uninhibited despite being almost bald, very puffed up from steroids and a tube hanging out of her chest. What an attitude!

On Friday, we are going back to the clinic to get check her counts and if she did (which I doubt, mark my words), she'll go for the second half of her Delayed Intensification next week.

Please keep Julia in your thoughts during this time!

Love
Lola

Tuesday, September 30, 2003 10:05 AM CDT

Well, we had a really rough night. Julia was up all night with the leg pain and going to the bathroom every 40 minutes or so. I was very worried until I got many responses from parents of ALL list. Apparently Vincristine+Decadron combo can cause the nasty leg pain, even though her last dose of Vincristine was last Monday, 8 days ago. Julia finished her Decadron on Sunday and I was looking forward to her feeling better, having better mood and less eating. She had a pretty good day yesterday after feeling low and tired in the morning. Again Reiki did its magic and Julia was having her funny/sunny moments. She told me in the car that the new name for Mark Kreiser is "My little cutie pie with flowers on his head!". I forgot to say that on Sunday when she was making up names for Mark, she started saying, "I know, Mark and Cheryl are not husband and wife...", Cheryl gave her the killer look said, "Don't even go there, girlfriend, Mark is mine". It was so funny and cute the way she is so into Mark (like all kids who know Mark).
But anyway, I called Julia's nurse and oncology fellow, they both seem to think that the leg pain is probably a Vincristine side effect and going to the bathroom is the result of eating/drinking too much while on steroids. I really hope that it's that and nothing else. Julia had a lot of leg pain just before she was diagnosed because leukemic cells were packed in her bone marrow. But she said that this time the pain is different. Steroids can cause neuropathy and Vincristine is a neurotoxic drug, so the painful sensations are definitely possible. It was so hard for Julia, she was moaning and groaning all night and even shaking from pain. But in the morning, I gave her Tylenol and she felt much better and even decided to go to school until noon. She is such a fighter!
Today is the last day I have my old insurance that covers acupuncture and luckily I made an appointment with Dr.King to take advantage of insurance while I still have it. So maybe he can come up with some treatment for the pain also. I know he performed a successful pain relief treatment for a woman during childbirth last month which is pretty amazing. Acupuncture can easily prevent any pain in head or neck, but it is much harder to treat the lower body. I am just glad that Dr.King has got this experience and we might be able to avoid regular pain killers.
Dr.King gave me a huge discount on acupuncture treatments in the future for Julia (just covering his expenses and not making any profit from treating her) after he learned that my new insurance does not have the acupuncture benefit. I am amazed how many people helped us during this difficult time.

Well, please continue to send Julia positive thoughts while she is still having the toughest treatments. Her hair is almost all gone and I am looking for a good wig for her (she wanted one). So if you know a good place (online or in a store), let me know.

Lola

Monday, September 29, 2003 8:17 AM CDT

Hello!

We survived a whole week of steroids again! This week was especially tough because Julia just finished a steroid week a week ago and the effects from that first week did not completely go away yet. Also we had no electricity until Wednesday evening, so I had to run to the store every day to buy her food. She had new cravings this week - she wanted Russian Borsht, buckwheat kasha mixed with Erivan yogurt (only papa can mix this right!), small pancakes ("oladushki") with sourcream, and oatmeal once in a while. I feel lucky that she was craving relatively healthy food, not goat cheese pizza, prosciuto and pickles like last time. Steroids made Julia very tired and clingy. All she wanted was me to be with her, but she was so crabby and whiney and angry no matter what I did.
Her counts are probably very low right now, but we are not going to the clinic until Friday. If her platelets and ANC are too low on Friday, she won't start the second half of her Delayed Intensification phase, but if ANC>=1000 and Platelets >=100K, she will go back to the clinic for a lot of chemo on October 6th. She will start with another spinal tap, Cytoxan with all day IV hydration (this drug can be very damaging to liver and kidneys), and start oral 6TG which is similar to 6mp she had in Interim Maintenance. I will also be given ARA-C (nasty chemo that can cause a lot of nausea and high fever and flu like symptoms) to put into her Broviac at home. There will be 4 days of ARA-C, followed by a week break and then 4 more.
Julia's hair started to fall out finally over the weekend. She still has a lot of hair left, but it's very thinned out, and her pillow grows her hair every night. She will probably lose all of it soon, but she does not seem very upset about it. She was more upset that she had to get a short haircut earlier in the treatment, she loved having long hair!
So Julia has been feeling very down and tired and even refused to go to school today, a very rare thing for her, I think she only missed school on her own accord once before! But maybe it is for the better, with the low counts like hers she might avoid catching some bug at school. Leah went on her own today and was fine when Daniel left her there.
Today Julia will have another Reiki session with Tom and John and I really hope that she will perk up after it, as usual. She had some acupuncture done on Saturday, but it usually does not produce an immediate effect like Reiki, usually a few days later.
Yesterday she was so funny with Mark and Cheryl, kept inventing new names for Mark such as "Your new name is going to be Mark With Beautiful Flowers on Your Head" and similar.
Hope everyone is doing well and enjoying the beautiful weather. Please think of Julia while she is going through the toughest phase of her treatment and pray that she has no fever while she is neutropenic and has no major side effects from her treatment. By the way, Julia's cardiogram results are in and her heart is completely healthy now. So hopefully in the long run Doxorubicin would not affect her heart either.

Take care
Lola

Wednesday, September 24, 2003 9:46 PM CDT

Well, we are back finally. Cannot believe that we were without power since last Thursday (about 5 p.m.) and got it back just today afternoon! It was craaazy, but boring to describe, so you can try to imagine for yourself our life with a steroid raging, always hungry Julia and empty fridge, ha ha! Not to mention that there was no school Thursday-Monday and I just lost my job and am staying with kids without a babysitter!

Anyway! Julia has been pretty cranky and angry thanks to steroids again! Last week was actually very good and she had tons of energy and was playful and fun. Even Tom and John noticed during the reiki session that she was balanced this week. She was very happy to know that I am laid off and will be "her babysitter" from now on. On Monday we went back to the clinic to have her echo (heart sonogram) performed because one of her drugs, Doxorubicin, can cause long term heart damage. Then she had her last dose of Doxorubicin and one more Vincristine IV push. This was pretty uneventful.
Julia's counts are (which I got on Tuesday but did not write down immediately) go something like this:

ANC 170 (down from 1600 last week as expected), very neutropenic
HGB 9.6
Platelets 260K
HCT 26 or 28
WBC .97

As you can see a dramatic drop in ANC, but not too bad otherwise. Julia is very neutropenic and one more dose of Doxorubicin will probably (or already) make her ANC=0. We are not going to the clinic until October 3rd to check her counts. Her ANC should be at least 1000 and platelets at least 100K to start the second part of her Delayed Intensification phase. Thankfully Julia has been doing very well so far (knock on wood) except for extreme steroid side effects which are horrible moodiness, crankiness, anger, etc. and food cravings. I cannot wait for this week to end! We still have 4 more days of high dose of steroids to go and I don't know if I can survive this really!

I just hope that Julia will stay healthy and free of fever while she is so neutropenic (low ANC, cannot fight infection) because any fever would mean automatic hospital admission.

Julia continues to have her weekly reiki and acupuncture treatments, and I think both help her tremedously. I also switched to liquid tinctures for all herbs (whenever possible) because they are easier to mix and in more pure form, some of them are even alcohol free on glycerne base.

Julia is supposed to lose her hair in this phase, but I did not see any new hair loss, in fact, it grew some. Her oncologist said that the drugs she will be getting in the second half of her DI - ARA-C and Cytoxan will definitely make the hair fall out. Whatever... the hair can grow back!

I also would like to thank everyone who sent Julia cards in the mail - especially Cheryl and Jim Z. this week. Julia loves getting mail with her name on it, cards, letters, etc.!

On a funny note... I now give her a quarter for each time she takes her medicine. Pretty soon she'll have more money than I do. I am planning to take her to a dollar store to let her spend her money there on whatever junk she wants, this will be a lot of fun for her and she has a purse and everything!

Well take care! Hope you all have electricity now and we sure enjoy every minute of it now too!

Lola

Monday, September 15, 2003 8:23 PM CDT

(Added update on 9/16 at the bottom)
hello all,

on friday julia had her asparginase shots. she was very nervous in advance because i stopped by her school and put the numbing lotion - emla - on her thighs about 2 hours in advance. she kept screaming that she was not ready yet at the nurse and while she kept saying that she was not ready she really did not notice that she got the shots. i put so much emla on her thighs that they were probably frozen to the point of total numbness. thankfully julia did not have any reaction to the shot and after we spent half an hour at the clinic, we could go home.

the steroid week was pretty tough. julia became extremely moody and totally dependent on me. she went to school, but was pretty wiped out to do anything else. she spent time hanging out on my lap or watching movies and muching, of course. she began the real non-stop eating during weekend and it still continues today. this week she is off of steroids, but next week they will be restarted again. i really really do not look forward to the next week.

today we went back to the clinic and julia had a checkup and another dose of vincristine and doxorubicin, a.k.a. the red devil. this red medicine makes urine red, but julia's was slightly orange right after and then normal afterwords. our nurse beth told me that it was a sign of good kidneys which is strange. i though good kidneys would process the stuff out and not hold that in - i mean the color, if that makes any sense. if anyone can explain this mystery to me, i will be forever grateful.

julia felt tired and queasy, but did not throw up. i gave her zofran, the anti-nausea drug, before the appointment. we were late for reiki session today, but luckily made it there eventually. it was great to see julia perk up at the end of the session. when we came there, she was tired, listless and sad. by the end of the session, she was making tiger noises and became really playful with john. it was great to be with her tonight because she was really sweet and calm and playful. the eating continued, but i think it subsided a little bit. the reiki sessions have the most dramatic effect on julia when she is at her worst, tired or mad from steroids. the effect is immediate and usually lasts up to a week. i notice it especially on those weeks when we do not have reiki appointments.

next week, we are having exactly the same set of medications - more vincristine and doxorubicin. after that she is getting a week off because her counts will probably be really low from doxorubicin and her anc must be at least 1000 and platelets at least 100k to start the second half of the delayed intensification phase. each part is 3 week long with a week long break built into it - so 7 weeks total. our nuse told me that it usually takes longer than 7 weeks because the counts don't always recover in just one week. so hopefully julia will be done with the tough phase by the end of october, before halloween. she loves halloween and the girls already got their butterfly costumes. leah picked blue, of course - dorothy color and julia picked yellow, her color deu jour.

so all in all, we are surviving ok.

on the house front - we signed the contract on the condo we loved and our settlement is on november 15, we cannot wait and are afraid to jinx it, so i will say no more. there are no offers on the house yet, but yesterday we had an open house and our realtor said about 25 people came to look, several very interested. our realtor also dug the statue of st.joseph, a saint who helps in house selling, so we'll see if this makes a difference - no comment!

and some more interesting news. tomorrow i am going to work to get laid off! i do not know any details yet, so tomorrow will know more after my meeting with the bosses. i am hoping for a decent severance and unemployment benefits because we would be in a real tough financial situation.

so that's it folks. thanks for stopping by and for your entries in the guest book. julia loves them.

lola

Sep. 16 2003

Got Julia's counts today and they are great.

ANC 1600
HGB 9.9
WBC 5.97
HCT 28.7
PLT 260K

I called julia's nurse from the cell phone while driving so could not write down them and do not remember the rest of them.
As you can see they are all up because her body is just now recovering from the virus and no chemo from 2 weeks ago and the new chemo that she got during the DI phase has not kicked in yet. The bone marrow takes a while to react. Julia has been doing great, but complaining of intermittent stomach pains especially after eating. I am afraid she might be getting an ulcer because of steroids.

Oh and one more thing! I did lose my job today. I was laid off effective this Friday. I have mixed emotions about it now, not all negative.
Lola

Thursday, September 11, 2003 10:20 AM CDT

Hello all,

We had a couple of "fun" days with Julia. Thankfully she is in great shape physically with her dizziness gone and finally more color in her lips (HGB is up, I know it). However, she has been on steroids for 3 days, today is the 4th, and the side effects are horrible. She is not eating us out of the house yet, but she is extremely irritable. Yesterday she had a meltdown that lasted for 1 hour and today she screamed for 1.5 hours in the morning. Both times she was upset about clothes. She also gets into a mood deciding what she wants to eat. I found 2 favorites though - goat cheese pizza from Trader Joe's and Italian proscuito from the same place. Also pickles.

Today we had to miss her echo appointment because she screamed for so long and was so upset that she will be late for school that we were late for the appointment and I had to reschedule. Tomorrow we'll be going to the clinic because she needs her Asparaginase shots (deep intramuscular shots in both legs) and I don't even know how to bring it up. Probably will explain it to her in the last minute right before the appointment to avoid another rage attack.

Life is fun.

Check again later.

Lola

Tuesday, September 9, 2003 1:08 PM CDT

Hello again,

Julia started her Delayed Intensification phase yesterday. I will back up a little though. On Friday she had her counts done to make sure her ANC is high enough and it went down to 1180 (from 1500s on Tuesday), HGB went down 9.0 (from 9.5) and Platelets came up a little to 127K. I was concerned about the low HGB, but she had some acupuncture treatment and I was hoping that it would come up.

Yesterday she had her first day of chemo after a 2 week break. This is a tough phase, and it started with a bang:

1) Intrathecal (spinal) Methotrexate. Julia was getting conscious sedation for this one along with Zofran (the anti-nausea drug) because last time she vomitted after spinal. She stayed awake (as usual) throughout the whole procedure and it took 3 people to hold her still. She was talking and even making wise comebacks at us. For example, when the I told her to please be still because you are getting some medicine into your back, she said, "No way, my back does not have a mouth" which cracked everyone up. Then to distract her attention, the nurse asked her to sing a song, so she sang a new song from school that the teacher sings during snack so that kids would memorize each other's name (new school year, new kids). It went like "Wiggly, woggly woolia, an elephant sat on Julia" (etc, for everyone's name). Apparently the song includes some butt wiggling and Julia tried to wiggle at the most inappropriate moment with the needle in her back and all.

2) She also got IV push of Doxorubicin which is red medicine that can turn urine red for a few days. We have not seen it though. It can also cause heart damange in the long run, and Julia is getting an echo cardiogram on Thursday to check her heart.

3) IV Push of Vincristine.

4) Started a 7 day long pulse of steroids at higher doses than before.

Despite of all of the above she went back to school right after the clinic appointment and eating her lunch in the car. She is a trooper!

She was not feeling that great this morning, complaining of dizziness. She really wanted to go to school, but could not get off the couch! I called the nurse and she told me to watch her closely. The nurse also told me that there were 8 white cells found in her spinal fluid, and thankfully they were just normal white cells with the normal differential. However, the presence of white cells can indicate a problem such as meningitis. Julia does not have any symptoms so hopefully it is just a fluke. Her counts also changed:

WBC 3.0
ANC 840 (before the chemo, kind of low, but they said OK anyway)
HGB 9.3 (it is up just a little bit since Friday, but it's great to see it climb up!)
HCT 28
Platelets 178K (also up, thank god!)

The ANC count was kind of iffy because the lab did not provide the differential. It can mean that Julia is still fighting something viral. I hope she can stay strong for this phase because she is getting some strong chemo. I think it is very unfortunately that she could not enjoy her break from chemo for the last 2 weeks and increase her count because of the virus. But she is strong and healthy otherwise and I believe that she will do well.

She is in school now and I hope that she would not have to miss her school or ballet classes too much.

We had a milestone today! For the first time, Leah went to school and stayed there for over an hour by herself. She fussed for about 15 minutes, but the director called me to say it was just an angry, not sad crying. She was great afterwords. I had to buy her the Kelly set with Dorothy, Lion, Scarecrow and Tinman because I promised her if she stays in school. I think she is very proud of it too. I think after she turns 3 (in October), she will really get used to going to school every day.

Lola

p.s. I would like to thank Larisa et al from Houston who sent us a wonderful collection of fairy tale themed gifts. The girls loved everything and especially the fact that everything was about the fairies. Julia wore the outfit with skirt to the clinic and school yesterday and everybody just kept oohing and ahhing over her. You are always sending us the most thoughtful and wonderful and gifts and nothing is better than to see Julia and Leah smile when they open them. Where are you finding all these treasures? We were going to call you yesterday but things got kind of hectic!

p.p.s. The house is still on the market and we really need to sell it because we found the apartment of our dreams - 4 bedrooms in a highrise, next to metro, 16th floor, pool, etc. It is a little pricey but it is a huge place with lots of conveniences, we really hope to get it!

Tuesday, September 2, 2003 9:06 PM CDT

hello all,

we had some new developments here. first of all, i apologize because the shift key is not working on this laptop, so everything will be in the lower case.

julia had not been feeling too good last week, coughing and even vomitting once on wednesday, even after her chemo was stopped and she was supposed to enjoy the break before her delayed intensification phase. on friday, we went to the clinic to check her counts to see if her anc is at least 1000 and her platelets are 100. i was not worried at all, because her counts were so high 4 weeks earlier. however, as i learned later, her anc dropped to 840 from 3400 and her hgb dropped to 9.5 from 10.9.

on monday julia started running a fever of 99.8 and since it was labor day, i had to call the oncology fellow on call at the childrens hospital. she told us to go to the emergency room immediately because fever can indicate a bacterial infection or even a blood infection from julia's broviac line. the fellow called shady grove hospital and we were seen immediately and given a private room. julia was treated like royalty there the entire time. her lungs sounded clear but they x-rayed them anyway, nothing was found. they took blood samples to see if anything grows there that would mean a bacterial infection in the blood and we still do not know the result as it takes a few days to find out. julia received an antibiotic in the iv and was sent home because by that time her anc was already 1567. by that time her platelets dropped to 102 from 200 on friday, the hemoglobin stayed essentially the same going down to 9.5. at home she developed some diarreah /spelling/ and even had an accident during the night, which never happened to her before. this was probably caused by either a virus or the antibiotic, but most likely the virus - at least that is what the doctor thinks.

today we were supposed to start her di, but julia's oncologist did not feel safe because the blood culture results did not come back yet. we went to the clinic only to get another shot of antibiotics just in case. julia's fever broke and she feels much better today. the oncologist and the nurse were completely unconcerned about the counts going up and down and platelets dropping because apparently platelets drop with the fever. hopefully it is just a virus. the good part is that julia was able to go to school today for a couple of hours. she will be able to regain her strength this week while still off chemo and hopefully will be strong enough to go through the delayed intensification phase without many problems. on friday we are going to have her counts checked and if her anc is over 1000 and platelets are over 100, she will begin her delayed intensification on monday.

we also had another reiki session today with tom and john. she did great after that and was in a great mood and very energetic and hungry. she is finally sleeping now.

thanks for checking up on us

lola and julia
p.s. the picture above no longer looks like julia as she lost her steroid cheeks and looks skinnier now. she also managed to grow 1 centimeter in the last month, yeah1

Monday, August 25, 2003 10:50 PM CDT

Hello all,

Another week has gone by. It has been going pretty good, considering. Today Julia had her last dose of methotrexate and 6 mp and will have a week off chemo (hurrah!) before starting her Delayed Intensification phase. She has had another good week, except for what seems to be a start of a new cough/cold (hope nothing serious, as her only symptom is a slight cough and no fever!). Also this morning she was being such a good girl taking her yucky supplements mixed with icecream even though she was queasy, that she threw up all over me, her quilt and herself. But felt great afterwords and ENJOYED a great outing with Mark and Cheryl at the zoo. Back home, she could not stop talking about the zoo animals. Our Wash.DC national zoo is great. Julia was especially impressed about the giraffe. She described it to me so poetically - the giraffe is white and light brown shapes outlined in darker brown and black tip of the tail and ears. Julia also loved seeing zebras. She has such an eye for detail, is amazing! She was totally excited about being there! Thank you Mark and Cheryl for keeping your promise and especially keeping the date she picked even though I know you had to work, etc.

This weekend Grisha (our friend, too old to remember when met him first, er, actually remember, 7th grade!) is coming to visit us. Julia is very excited as she loves Grisha visits maybe because he is known to talk to her endlessly like an adult.

Leah just got over a strange illness, sort of like a flu with stomach symptoms. However mysteriously enough nobody else got sick.

I personally am sick and tired of the leukemia business and cannot believe we have to endure this for another 2 years. The hardest part is not knowing what will happen next. Julia sometimes feels very well and healthy but sometimes tired and cranky. At least she never had a fever since diagnosis and we never had to be readmitted to the hospital. I hope we never have to as that place is the place of horrors for us.

House selling is not going anywhere. People are out of town before the labor day and nobody is buying/selling. There are no 3 bedroom apartments for sale in Bethesda under about 1.5 million (ha ha, right in our bracket). Anyway, the house is still for sale so if anyone wants it, let us know.

On Saturday we saw dr. King (the acupuncturist) again who shared with me that he believes that our fate is predeterminded, therefore there is no value in worrying abou it. Made me feel calm and secure by taking control over what happens out of my hands. I kind of agree with him, but forget his wise advise at times when overwhelmed with daily life. All in all, it is not too bad as we made through the first couple of months with sanity more or less intact.

Hope everyone is enjoying a good weather and having good time. Thank you all for your messages in the guestbook, have no time to reply to all.

Love
lola and Julia who is going to be 5 and a half on September 5 and is proud of it (yeah, we are having a party too!)

Tuesday, August 19, 2003 8:48 AM CDT

Hello all,

I have not updated the journal in a while. Things are going well with Julia. We are settled into a some kind of a routine now and life is sort of back to normal. However, this will not last long because Julia will start her Delayed Intensification phase on September 2nd that will last approximately 8 weeks. We are hoping that she will go through this phase with minimal side effects and will be able to attend school at least part time.

Julia has been feeling very well the last couple of weeks. She got over her cold faster than I could! (of course, I also got it and was miserable for a week). She has easier time with taking her supplements which I learned to mix with small amount of chocolate ice cream and give it to her throughout the day. She takes her chemo meds before she goes to bed. 6 mp is tasteless and she just chews it. Once a week she takes 6 methotrexate pills with 1 zofran (nausea med) that I mix with water and a little orange juice. We are seeing an acupuncturist every week and Tom and John for reiki also about once a week. I think that supplements, reiki and acupuncture together really make a big difference. Last time we saw Dr. Nguen (the acupuncturist), he mentioned that Julia is much better, her color is good and her toungue and pulse suggest that she is in great shape, considering. She has calmed down and does not get cranky any more, she has a lot of energy. All in all she is doing very well and I am almost afraid to jinx it.

This month there is no school camp. So we are hanging out at home, seeing friends and going to a park. On weekends, the girls see both mine and Daniel's parents who let us get away for a couple of hours without the kids. WHich is very nice because we do need a break from the routine also. We are hoping that our house sells quickly. It has been on the market for 2+ weeks and there were several people coming back to look at it. I hope that means that an offer is imminent. We have not really found a condo that we like, but if we get an offer in the next few days, we'll bid on a 2 bedroom Promenade apartment. Although it has only 2 bedrooms, it is very spacious with a separate dining room that can be made into another bedroom or office and is almost 1500 sq feet. The best part of course is having both the outdoor and indoor pool in the Promenade. Unfortunately the market is very slow now, it is the end of August and everyone is out of town on vacations. Which makes both selling and buying harder now.

So that's all that is going on. Next week Julia is going to the zoo with Mark and Cheryl which is going to be a great fun for her. I am not sure yet how we will go about Leah who would want to go too but this was supposed to be a special gift for Julia. Mark and Cheryl gave her this special coupon and she could select going out with them to see a show, a ballet, go out to eat or visit a zoo for her birthday back in March. Of course she picked the zoo as you all know our Wash. DC zoo is spectacular. Maybe we will take both girls again so that Leah does not feel left out.

I am sure that I will be updating this journal a lot more often once Julia begins the DI phase, so come back to check on us later again.

Thanks for reading and hope that you are having a good summer.

Love
Lola and Julia

Tuesday, August 5, 2003 1:20 PM CDT

Hello all,

Yesterday Julia had a clinic appointment after a long 4 week break. The spinal and vincristine hit her hard yesterday, especially because she has/had a cold and cough going at the same time. Thankfully her lungs are clear and today she almost stopped coughing! Julia was very tired and cranky after the procedures and threw up at home (most likely because of the anesthesia medication she gets before spinal). Fortunately she was scheduled to have Reiki at 3:30 the same day and it helped her immensely. It was another eye opening experience, similar to her first Reiki session. When we got to Tom and John's house, she fell asleep in the car, was very cranky, etc. climbed on the table and did not even want to talk, did not want to touch the stuffed toy that Tom and John always offer her. They gave her a different small stuffed animal and she did not want it, so they just left it on her stomach. In the middle of the session, she picked up this toy and started playing. She was in great mood for the rest of the day and stopped coughing!

Her counts are very good:

WBC 5.45K
HGB 10.4
Hematocrit 33.2
Platelets 242K
ANC 4200 (that is HIGH, the highest it has ever been on chemo)

Julia is "enjoying" the last 4 weeks of her Interim Maintenance 1 and the Delayed Intensification phase is starting on Sep. 2. That day she will get another spinal tap, another Vincristine push, Doxorubicin and will start another 7 day pulse of steroids (higher dose too). That is supposed to be her first day of school.

Thanks for stopping by and reading.

lola

Thursday, July 31, 2003 8:52 PM CDT

Hello all,

I have not updated the journal for a while because nothing has been going on. julia has been doing extremely well and exceeded all of my expectations (knock on wood!). She has been eating very well and having tons of energy. Even her crankiness went away after the last reiki session with tom and john (who deserve another plug here www.wholebodyconcepts.com) which also coincided with some targeted acupuncture to calm her down. We had to miss about 3 weeks of reiki before that because of various logistics and I could really tell that Julia's getting unbalanced. Now at the risk of jinxing it, I'd say that she is back to her good spirits :)

Things got into a routine in the last few weeks. Julia's camp is almost over, tomorrow is the last day. Then we'll try really hard to occupy the kids in August. Julia will have another spinal tap on Monday, August 4th. she will receive intrathecal methotrexate and will start on a new 5 day steroid pulse next week. this month I did not notice any side effects besides a single vomitting episode. I am getting very anxious though about the delayed intensification phase which will start in about 4 weeks. Please keep Julia in your thoughts and pray that she will continue to handle her treatment well.

Julia produced a tons of crafts in her summer camp and I can really say that she has a knack for drawing and any other kind of art. She is starting to read and has been able for a couple of months already but is not willing to work on it. i hope that when the school starts in September and she will be with 5 and 6 years old (the Montessori version of the kindergarden), her reading will really pick up.

hope you are all having a good summer.

lola

Monday, July 21, 2003 3:01 PM CDT

Update July 22, 2003

Well, we had a pretty rough morning today. For the first time, Julia threw up at home. As some of you know, I have a vomiting phobia, but Julia did not even care all that much and went back to sleep. Last night she had a dose (6 pills) of methotrexate and this medication can cause nausea. Also I noticed when she was sleeping this morning, she was jerking in her sleep. Maybe she was dreaming or maybe she is low on potassium or other minerals. I just hope it is not seizures. The nurse told me on the phone that it is not likely but to keep watching her (like I will ever stop!). So that is it. I will be picking up her Zofran prescription today.

Lola
Hello again,

This is another quick update :)
We will have no clinic appointments until August 4th (unless there will be a reason, but we hope not!). On August 4th Julia will start the second half of her Interim Maintenance I phase and will receive another spinal tap, another IV push of Vincristine and will start on a brand new dose of steroids.

Julia has been feeling pretty good and has a lot of energy. I can only say that the only noticeable thing besides her thinned hair is her nasty temper. She behaves like she is going through terrible twos, except she is 5 years old. I am sure her body is not too happy on chemotherapy. I think Julia could use more sleep (she sleeps about 10 hours per day) but I have a hard time getting her to bed until about 10 p.m. and she is up around 8 a.m. each day. Also she is probably having some control issues as she probably feels like she lost control over her life in many ways. So she is trying to reclaim control where she can. It is hard to treat her as if she does not have cancer because it is tempting to give in into her tantrums, but I try really hard not to make a big deal out of them. I noticed that just "commiserating" and "symphathising" with her when she has a tantrum makes it go away faster (versus trying to console or distract her). It sounds like it is a big deal, but she mostly behaves like a normal 5 year old who is a little cranky because of not sleeping enough.

Julia seems to have the same urinary/bladder symptoms that she had back in April before her diagnosis. Her nurse thinks it has nothing to do with leukemia and she told me that some kids have the symptoms without any detectable underlying reason (yea, right). In any case, I do not want to subject Julia to a battery of tests just yet because her symptoms are so limited. Basically here is what happens. Only at night, after she is in bed but before she falls asleep, she has the urge to pee 2-3 times (within 40 minutes or so). When she goes to the toilet, she can't produce much. She gets annoyed and angry and finally falls asleep. She gets up to go the bathroom maybe once a night(I don't know for sure because she goes on her own). She has no urges like this during the day. She has no fever. Therefore it is probably not an infection. Then what is it? Is it something psychosomatic? The only reason I am slightly worried is because I associate these symptoms with her being diagnosed with leukemia (the symptoms went away after she started treatment). If anyone has an idea, what that can be, please let me know. In the meantime, cranberry juice probably won't hurt.

Other than that, Julia had a great weekend. I took her and sister Leah to the Imagination stage theater (Julia's school friend Valerie and another little Julia were there too). We saw the Junie B. play where all the kids are played by adults. They were so good that Julia was convinced that they were real kids! Yesterday we left the girls at Danik's parents and they took them to their apartment complex swimming pool which was great (I hate the pool anyway, so was glad that the girls got to enjoy it without any damage done to me :)) Julia is in school for the rest of July and then we have a whole month of August with nothing to do. So we'll probably start going to the park/playground or pool more often.

Lola

Tuesday, July 15, 2003 1:01 PM CDT

Hello dear friends and family,

We have had a few sunny days recently and this was great.
Julia has been doing much better now that she is off of steroids again. The moodiness went away almost the next day after she stopped them and the food cravings are also gone.

She continues to enjoy going to summer camp at her Montessori school, but that's pretty much the only outing for her. I think she may get too tired plus I do not want her to get an infection from an unfamiliar place. She spends from 9 to 3 p.m. at school camp every day and then we just hang out at home. On weekends, the grandparents usually visit us or we visit them. The life became much slower as we are taking it easy this summer and the kids are not enrolled into their usual activities (Julia stopped her karate lessons back in April, as well as ballet).

Julia's appetite returned to normal or almost normal and she is having a lot of energy lately. I am very grateful that she is handling her treatment so well. At this point we are in the middle of interim maintenance 1 and it SHOULD be a relatively less intense phase, sort of like a break in between the intense chemo. But she is still on 3 different oral chemo medications this month. We continue to see the acupuncturist and continue with supplements as before. This Sunday I received my Reiki I certificate after completing 2 5 hour sessions with Avi (the Reiki master). I had an incredible Reiki experience during my second attunement and now feel the energy in my hands. I practice on myself and kids all the time. I now now that it really works, I can feel it.

Yesterday we went to the clinic just for a blood draw! The first appointment that did not involve any chemo. We needed to know her counts because they have been all over the map, and her medication dosage needs to be adjusted. The medication needs to decreased or increased to keep her counts low enough but not too low. Right now her counts are all almost in the normal range (listed below).

WBC 5.86
HGB 10.2 (climbing up each week, go bone marrow!)
HCT 32.4
Platelets 460K (above normal, but a sign of the bone marrow recovery)
ANC 3270!! (the infection fighting indicator and is now in a normal range or almost)

Julia is now in her 3rd week of interim maintenance one. The first week she received 100f oral 6mp and her ANC went down to 750. Then she was on 50f chemo and it climbed to over 2000. Now she is on 75f 6mp and is now even higher. So she can probably return to 100f her 6mp. She is also taking oral methotrexate at 100f the dose. I think she is sensitive to 6mp, but her body probably learned to adjust and her bone marrow works really hard to produce so many healthy cells despite the chemo.

Julia will not have another appointment for another 3 weeks! But then on August 4th, she will have another spinal tap and another dose of intrathecal methotrexate injected into her spinal fluid.

Please pray that Julia will continue to tolerate her chemo so well and that her leukemia will stay in remission forever!

Love
Lola
p.s. Don't be shy, please sign the guestbook. Julia loves reading your entries!

Friday, July 11, 2003 11:13 AM CDT

Hello again,

Just another small update. Julia has been on steroids starting this Monday and she is having awful mood swings. In fact they are not mood swings because she is just plain in bad mood, crying often and everything seems to annoy her. I honestly do not know how we survived her first month of treatment while she was on steroids for 28 days! Thankfully today is the last day.

This time she has food cravings but her eyes are bigger than her mouth. She does not eat almost anything. Her appetite goes up and down. All in all this week was pretty hard.

On top of all that, she has been having stuffy nose (along with Leah) and both Daniel and I went through a little cold too. For some reaosn the kids still have stuffy noses and it has been a week already. Julia's ANC is high so maybe she picked a good time to have a little cold.

She is in school today. We have no plans made for August, there is no school camp and basically nothing to do. If anyone has ideas on what to do something fun with the kids but to avoid crowds and the swimming pool, please write in the guestbook or email me.

Come back for more news later!

Lola
p.s. We have thunderstorms and just plain rain almost daily. What's the deal with the weather?

Tuesday, July 8, 2003 10:39 AM CDT

Hello friends and family,

Here is another update. Julia continues to do great, she is very active and happy. I could not have asked for more!

Yesterday she had another checkup and got another dose of Vincristine (IV push). She told the nurse that she wanted a spinal tap,LOL (she wanted a toy which the kids can only get after procedures).

Julia's counts are looking great this week:
(all counts are up!)

HGB 9.3
WBC 3.98
ANC 2310 (wow!)
Hematocrit 29.4
Platelets 335K
Lymphocytes 28%
Monocytes 9%

All of the above are the signs of the bone marrow recovery. Also Julia had been taking only 50% of her 6mp chemotherapy because her counts went too low at the beginning of the Consolidation phase. We are going to increase her 6mp to 75% this week.

Yesterday we started the Interim Maintenance I phase. It started off with a whole bunch of new medicines:

Dexamethasone (for the next 5 days)
Vincristine (on day 0, yesterday)
daily 6 mp (75%)
methotrexate 6 pills once a week (she took hers last night)

Her counts will probably go down significantly next weeks as all the above drugs are antimetabolites and myelosupressants. If the counts will go down too low, her dose will be adjusted.

Since last week, we had another acupuncture appointment. I think that Julia reacts very well to acupuncture. I specifically asked the doctor to work on her hemoglobin and appetite and both went up very well in the last few days. Julia started eating again almost in a normal range. The doctor also showed me how to apply acupressure with my hands, it is sort of like a massage. Basically I have to stroke 2 of my fingers along the length of her spine (so that the spine is in between the fingers), upward her arms along the bone, circular movements on the palm of her hand, and parallel strokes below the knee. It is kind of hard to describe but very easy to do.

Here is another announcement, both Julia and I became Reiki I (we had our first attunement from a Reiki Master). There will be another session next week when I will get my second attunement for Reiki I. This week I can work on myself although I did not have much time to practice.

Julia continues going to school camp every day. Also for some strange reason, her hair stopped falling out. However many kids lose all of the hair in 24 hours once the Delayed Intensification starts, so I don't have much hope to avoid baldness (well, mine too because I promised Julia to shave my head if she loses all of her hair :)).

On Thursday we will again see the acupuncturist and Tom and John. This would be just in time because that would be Julia's 4th day on steroids, just when the side effects kick in and she would need some balancing.

And finally one last note, in the clinic we finally saw Cindy and Brandon (and his baby sister Kendall). It was again a nice surprise to meet her in person as we only exchanged e-mails until then.

Lola
p.s. Julia's Amazon wish list link is included in the links section (for those wondering which books or tapes she would like).

Wednesday, July 3, 2003 11:56 a.m.

Counts are added on July 3rd, 2003, the journal entry below counts updated on July 2, 2003

ANC 1196 (up from 760 last week!)
Hemoglobin 8.9 (up from 8.5 last week!)
Hematocrit 27.9
Platelets 314K
White Blood Cells 2.6
Segs 46
Bands 0 (bands are immature segs, so it is OK, because she has 46 of the mature ones!)


July 2, 2003
Hello friends and family,

I have not updated Julia's page in a week because there was not much to write. She has been doing wonderfully and feeling terrific this week! She went to school camp each day and is just enjoying herself without worrying much (it is my job).

The main problem is her appetite. She just does not feel hungry most of the time and is happy to skip breakfast, lunch, dinner and snacks combined! We saw Tom and John this Monday but I no longer see the immediate reiki results mostly because she feels so good in between.
She also has a hard time with all the medicines and supplements. I used to mix them with orange juice but she hates it now. Now I resorted to chocolate syrup (yeah and I found an organic one too!) and icecream and she does not even want those anymore. Out of desperation we tried plain water with a lemon squeeze and it worked today. I don't know what to do next, so if you have suggestions, please write in the guestbook. By the way, thanks everyone for your uplifting notes, Julia loves reading them. Also check out her Smile quilt made by a generous person I do not even know :)

Julia had a couple of acupuncture (or I should say acupressure sessions) and these are not very interesting as she just gets little sticker pellets (beads) in her ear, back and legs. They cover specific points (meridians) for kidney and liver protection, for blood balance, for appetite, and for breathing (to compensate for low hemoglobin). I think both Reiki and acupuncture have subtle but powerful effect and that is why she feels so great, both physically and emotionally. Just being her sunny self!

Today we had another appointment at the clinic. It was pretty uneventful as much as spinal tap can be uneventful. Julia had a crying fit right after but then went home and is fine, running around like a crazy little girl :) This was the last spinal tap in her consolidation phase. She will continue on oral 6 mp for the next 7 days and that will end the consolidation. After that Julia will be starting her Interim Maintenance I phase which will last 56 days.

The Interim Maintenance will include:
1) Dexamethasone (Decadron, steroids), two 5 day pulses starting on Day 0 and Day 28 of Interim Maintenance I (IM I)
2) Vincristine by vein twice on day 0 and day 28 of IM I
3) Mercaptopurine (or 6mp) every day orally
4) Methotrexate once a week (orally)

As you can see this sounds less intensive than Induction or Consolidation. After IM I, Julia will go through the Delayed Intensification phase which will last also 56 days and will be a lot more intense as its name implies.

When I get her blood counts results tomorrow, I will post them at the bottom of this update. I was hoping to get a new picture, but Julia did not want to be photographed today, so maybe later.

Also today at the clinic, the doctor was kind of concerned about several bug bites that Julia had. She thinks that since they used to be filled with fluid, it could be chicken pox. She told me to bring Julia for a visit if she gets another one (the ones she had already were crusted and healing). By the way, Tom gave me some St. John's Wart Oil to put on her skin because of its antibacterial properties and the lesions immediately dried up and fell off (one next day, the other the day after. These bug bites or whatever there are, were still here on Monday, filled with fluid and kind of angry looking and that is when he noticed them and gave me that oil.

So, I hope it is not Chicken Pox. Will post more later when have Julia's counts.

Lola

Tuesday, June 24, 2003 12:31 AM CDT

Hello all,

Julia had another clinic visit today and Julia had her blood drawn for labs and ANOTHER SPINAL TAP (third this month). Believe it or not, Julia told Dr. Angiolillo that it was a "good one" and Dr.A just melted :)

Julia felt kind of dizzy for about 30 minutes but proceeded to the toychest right after the spinal anyway and picked another horrendous toy - plastic jewelery set :) The kids get to choose a toy from a huge box after they have procedures at the clinic.
She felt great afterword and went to school right after! She did not want to miss any fun. I cannot believe how strong she is!

Also we got more good news at the clinic. Julia's bone marrow cytogenetic test came back absolutely negative for leukemia, so she is in true remission - no leukemic cells at all that they could detect (meaning all her cells are free of leukemia markers)! Unfortunately some cells deteriorated in the lab while waiting to be processed, but Dr.A was very confident that the Dr. who did the cytogenetic testing would not have attempted the test if she thought that the results would be meaningless.

Since the doctors forgot to give a consent form to be included in the study at the beginning of Julia's treatment with our permission, she will receive the standard treatment all the way which means only ONE delayed intensification phase (which is the worst in terms of intensity and side effects). If she became a part of the study, the computer would have chosen an arm of the study and some of them include two DI (delayed intensification) phases - this choice is completely random for every child on the protocol. I am actually glad that I did not have to make this decision and feel pretty comfortable that she is not getting as intense treatment as she could have been getting. She has a very good and early response to chemo, so hopefully that is all the chemo she needs. The length of her treatment will still be 2 years and 3 months (total).

Here are her counts this week:

WBC 2.0 (normal 4-10)
HGB 8.5 (It is the FIRST time since the beginning of treatment that her hemoglobin went UP instead of down. No wonder she feels so good. Normal is 12-18, but she seems to have adjusted to the lower level)
Hematocrit 27.4
Platelets 315K
ANC 760 (still low, but at least above 750, so we are going to continue on 50f her 6mp dose until her ANC is higher)

We met Karen and Clare again at the clinic which was another surprise. Even a bigger surprise was to finally meet Darlene and Chirstopher (and his dad Dave and sister Missy). These are the kids whose parents I met on the internet ALL list and it is an amazing feeling to see them in person. They are very nice people who know exactly what we are going through. I think it helps the kids too to know that there are other kids in the same boat, so to speak.

So that's it. Thanks for reading our updates and your notes in the guestbook.

Lola

Monday, June 23, 2003 9:22 PM CDT

Hello all,
I typed an update this morning but just realized that I forgot to add it (!) so here we go again.

Julia has had a terrific week so far, her energy level is very high and she is running around, playing, dancing, etc! I cannot believe the change in her and am almost afraid to jinx it. I could not even ask for a better way she is handling her illness and chemo. Except for her balding head (slowly but surely) and still somewhat puffy cheeks and belly (she gained about 6 lbs on steroids and is now 44 lbs), she behaves and feels like she is completely healthy. She was only receiving half of her 6 mp dose this week because last week her blood counts were too low to continue at 100% of the dose. Today she went to school camp for the full day and enjoyed it a lot!

We had another session of accupuncture on Saturday and Julia got some accupressure beads on her head, left ear and above her knees. They are to create balance in her body (her left side felt significantly colder than the right, her accupuncturist let me try and I was astonished to feel the huge difference in temperature, especially her feet!) and help get over anemia.

Then I was reading and reading tons of information on various complementary cancer treatments. There is a widely adopted supplement made from various medicinal mushrooms, it is extremely popular in Japan and is used by oncologists in the hospitals there. I did a lot of research and talked to a nutritional pharmacist (Dr.Irv Rosenberg of the Apothecary in Bethesda) who also recommended it. It is an immune system modulator which means that it does not stimulate immune system to produce more cells (which we would not want because the leukemia cells growth should not be stimulated), but it enhances the ability of the natural killer cells to fight infection and cancer cells. The cancer cells have markers on them so that the immune system can distinguish them from healthy cells. The NK (natural killer) cells destroy cancer cells at a much higher rate (up to 300% increase in clinical studies). Also the medicinal mushrooms protect from liver damage, infection and even hair loss. This is well documented by Japanese and European researches and the supplements with mushrooms are widely used everywhere in the world, except here of course.

I found two very similar supplements MGN-3 and ImmPower, both mushroom based, but Dr. Rosenberg (the pharmacist) recommended ImmPower because it is a hybrid of 3 mushrooms and for some reason it is cheaper than MGN-3 (still one month supply for Julia costs $70, multiply by 3 for an adult!). I started giving her ImmPower 3 days ago. She has been taking so many supplements, I gave in and now mix them with chocolate icecream. This way I can hide all of her supplements except the palatable ones there. Currently she is on the following:

Food - Goat milk whey (dried)
Chinese herb - Astralagus (immune system modulator)
Culinary Root - Ginger (digestion)
Herb - Milk thistle (protection for liver and kidneys)
Food (sort of) Transfer Factor (cow's colostrum extract, Immunoglobulins like in breastmilk)
Food (medicinal mushroom hybrid) ImmPower (immune system modulator)
Antioxidants for kids (A, C, E with whole food concentrates)
Soil based organism (probiotics) Primal Defense with whole food concentrate (mostly greens) (candida, fungal infection and parasite protection)
Food - Norwegian Cod Liver Oil (for cracking skin on lips - Tom saw Julia's peeling lips and recommended it and now her lips look healthy in just a couple of weeks! she only takes this one as needed)

Today we also had another wonderful Reiki session with Tom and John who each time surprise me with new things. They both noticed that Julia changed very much and is very happy and healthy looking. They had not seen her in a couple of weeks. Julia of course had a lot of fun during the session and came out of it in a very silly mood. She told me to go home because she wanted to stay with these guys (I assume she wanted to live with them forever, :))) I had to literally drag her out of there. Today Tom used what I think is called a singing bowl. It is a special bowl with intricate design engraved on it. Tom hit it with a special hammer which produced a harmonius sound and then he was moving the hammer around the round edge of the bowl and it sounded almost like music. He was holding it above Julia's body and moving it from head to her feet and up about 20 inches above her. It is used to send vibrations down the chakras to get them moving (rotating actually). The chakras are channels inside the body that are receiving energy (univeral healing force energy). I know this sounds far out, but it really works. In fact, I am reading the book Essential reiki By Diane Stein and once I am through with it, I hope to get a reiki attunement from a reiki master and help Julia anytime and anywhere she needs it (or Leah too! or even Danik, he he).

After we go to Tom and John, I always get a surge of energy and good mood and I am wondering if John does this to me when he puts his hand on my back. I hope everyone who is reading this journal, if you live in the area and have health problems or are looking for optimal health, check out Tom and John (by appointment). Their website is www.wholebodyconcepts.com and their phone number is there . John is a licensed massage therapist and Tom is an experienced herbalist, both of them are Reiki II level. They put their hearts into their work!

OK, now back to Julia. She was in a terrific mood after the reiki session as usual. But I am getting slightly nervous because tomorrow we are going to the clinic again. I think Julia remembers pretty well her spinal taps despite the conscious sedation. Tomorrow will be her 3rd spinal tap in 3 weeks. I don't know how she does it. Hopefully she will feel good enough for school camp after her appointment. She usually gets cranky for half a day afterwords, so we'll see. I feel lucky that she is handling all her treatments as good as she does! She will also get her blood counts and I believe her liver enzyme levels checked because with 6mp the liver needs to be monitored closely. We will probably learn the cytogenetic results of her bone marrow test that she had 2 weeks ago. If you remember, the lab let the sample sit for too long and a lot of cells deteriorated, but they are now doing a more sensitive (FISH) test to check for the markers of leukemia on the remaining blasts. This is even more accurate than checking the number of blasts or immature lymphocytes because healthy people have up to 5% blasts in their bone marrow and the only way to tell them from leukemic blasts is by doing the cytogenetic workup on them.

OK, I wrote a long one here and there will be another update tomorrow, after the clinic visit. So come back soon.

Thanks everyone for reading and caring about Julia. I am sure that your positive thoughts and prayers are helping Julia stay so strong and feel good despite what she is going through. Remember she is going through one of the most intense part of treatment now and we are only 1 month and 12 days into the treatment, so it is a long road ahead (OK, I am counting days actually. Roughly her treatment will last 820 days, we have done 43 days which means 777 days remaining. But we'll get through them one at a time).

Namaste
Lola

Thursday, June 19, 2003 4:54 PM CDT

Hello all,

Julia had another pretty good day. Her Broviac had some discharge from entry site yesterday but it is not bleeding or red beyond the stitches. I am monitoring it closely in case she runs a fever or the redness spreads. I hope that it is just her stitches healing.

Today we had an intersting appointment with Dr. King (the accupuncturist) who was recommended to me by a friend. He examined Julia's spine and told me that her spine is somewhat damaged (not severely or anything but not perfect. He said it maybe due to incorrect sitting postures or a uneven fitting diaper). He recommended the spinal massage and I was surprised because I thought that it was not safe to massage the spine in cancer patients. Talked to John afterwords and he confirmed that too much detox brought by deep massage is too hard for the liver.

Thanks for your notes in the guestbook, Julia loves them!
Later
Lola

Wednesday, June 18, 2003 11:25 AM CDT

A little update. Beth (our nurse practitioner) called to say that since Julia's counts dropped so low, especially her ANC that went from 2390 to 730 in one week, and the cutoff point for ANC during this phase is 750, the doctor decided to lower her 6MP dose by half. I was told not to worry because the risk of getting an infection at this point exceeds the risk of not getting out all leukemia cells. The nurse said that all it means that the rest of the chemo will eventually destroy her residual leukemic cells in a later phase.

So there is one more reason for me to get paranoid. To worry whether chemo is doing its job or not on half a dose.

On a positive side - I made an appointment with Dr.King, the accupuncturist (recommended by a friend). He performs accupuncture on children as well, and he is very good (supposedly). The best part is that I was told by his receptionist that they accept my insurance, but I have a hard time believing that. We will find for sure tomorrow.

Julia is doing very well, laughing and playing and currently I cannot even tell that she is experiencing any side effects. The only visible one is progressing hair loss and paleness, but she seems to have adopted to the low hemoglobin and is running around with tons of energy (and I am very happy and grateful for that!) She even started to walk better and when she attempts to run, it looks a little more like running (her feet do not stay in the air together for more than a fraction of a second though). And she is climbing stairs better and better everyday. I cannot believe that her counts are as low as the test indicates.

Lola

Tuesday, June 17, 2003 12:02 AM CDT

Hello all,

Today Julia had her day 7 consolidation appointment which included a checkup and spinal tap with intrathecal Methotrexate. Since Julia has been walking for a while in a strange way, not really limping but slightly dragging her feet as well as unable to run (both feet in the air) or walk stairs indepedendantly, I asked Dr. Angiolillo to take a look at her walking. She said that Julia is walking fine considering her medications (steroids and Vincristine) because they cause muscle weakness and some nerve damage and hopefully it won't be permanent. Julia had been feeling very good the last few days, playing and laughing and being in a great mood overall. However, today after spinal she became cranky again.

Her blood counts dropped dramatically this week because all her chemo this month is very destructive not only to the leukemia, but other blood cells.

WBC 2.16K (down from 8.1 last week, normal 4-10K) white blood cells

Hemoglobin 7.2 (dropped from 7.5 last week, normal range is 12-18)

Platelets 219K (still normal range)

ANC 730 (dropped down from 2390 last week, below 1000, so she is very susceptible to infection, but not critical yet. When it is below 500, then it is really low).

The consolidation phase of her protocol lasts 28 days just like induction, and Julia is on day 7 today. Her medications include daily 6mp, weekly spinal taps and spinal injection of Methotrexate and Vincristine on day 0 (that was last week). I am grateful that she is feeling as good as she is, considering all that she has gone through in the last 1.5 months. Her treatment will last another 2 years and 2 months (approx). I hope she will continue to do well with minimal side effects.

She keeps losing hair but it seems that she has enough for 3 people, so she still has a lot left, it is visibly thinned now.

Thanks to all who is visiting this page, please leave Julia a note in the guestbook whenever you read her update. She loves getting notes!

Lola

Sunday, June 15, 2003 12:10 AM CDT

Hello all,

Just wanted to update everyone on how Julia is doing.
She has had a great few days, finally 8 days after stopping dexamethasone (steroid), I say with certainty that her cravings are now diminished, but not gone. she is still craving salty foods like pickles, feta cheese, smoked salmon and pizza. However, she now is able to eat other foods like oatmeal with raspberries and my own homemade candy (thanks t.Larisa from Houston for a recipe - basically just ground up in food processor cocoa, nuts and seeds, honey and butter. i also add whey protein because it has vanilla flavor and is not noticeable). Her cheecks and belly are still puffy, but that is also going away.

Julia is now back to her own self, personality wise, but I can see that she is still not able to run or jump, or walk the stairs independantly. At least she is now able to get off the floor without anyone's help and sometimes walks a short flight of stairs just holding on to the rail without my help. She sleeps longer than usual and even fell asleep watching a movie at my parents' house yesterday early afternoon. She woke up in a grumpy mood. When Mark and Cheryl came and Mark let her cut his precious long hair, Julia still did not get into a good mood, unfortunately. i think she wanted to cut more hair than Mark let her (it was an awful haircut, but he was nice about it and even offered her to pay for the "service"!).

Her hair is shorter again, Danik cut it very short a couple of days ago. It is falling out very fast but she still has a lot left. As most of you know, she has extremely thick and curly hair so I think it may still last a few weeks or months.

so that's it. Nothing medical to add until tuesday when she has her weekly spinal tap with Methotrexate and another checkup by dr. Angiolillo.

Lola

Wednesday, June 11, 2003 1:31 PM CDT

Hello all,

Let me update you on the latest.

First of all, we had another great session with Tom and John. This one was in the morning right after Julia got up, so she was in pretty good spirits and I did not see the same drastic change as the first time. She was very smiley and happy to see both Tom and John and kept saing to me that they are so nice (they are!). Today's session was slightly different because Tom used some aromatherapy because he felt that she needed to be more balanced. He applied some oils (smelled like rosmary, but I am not sure) to her hands and ears. If anything, she liked the smell. Julia felt very good afterwords and we went to her school annual picnik where she was happy to see her school friends and teachers.

Also I had some sort of maddening news from the clinic. Julia's bone marrow sample apparently was not processed immediately and a large percentage of cells in the same deteriorated while it was sitting there in the lab. Dr. Sibell called me and personally apologized for this oversight, I think she was as mad as myself when I found out. However, she said that there were at least 300 cells left and there were virtually no blasts in there (a healthy person has about up to 5 percent blasts or immature lymphocytes in the bone marrow). The cytogenetics test that will check the remaining cells will be even more accurate because it look look into her tag or leukemia marker and if it is not there we should be even more confident that Julia is still in remission. The cytogenetics test is even more sensitive. Dr.Sibell said that Dr. Angioliollo will look at the same as well as oon as she is back from vacation next week. At least for now, it looks like Julia does not need to have another bone marrow test. Also Dr. Sibell said that Julia's blood counts also indicate an excellent bone marrow recovery which could not have happened if she still had a lot of blasts in her bone marrow and that her day 7 bone marrow looked already good (in remission). So all these factors made me feel much better and I am pretty confident that Julia is still in remission.

Her hair is coming out in clumps, but she has such thick hair that it is not even visible. She looks like she still has a full head of hair.

Also Tom gave me the milk thistle supplement and elderberry ("buzina") juice for Julia to take this month because her chemo this month will be very harsh on her liver and kidneys, even her mainstream doctors will be monitoring her liver function each week when we go to the clinic. The good thing is that Julia liked the taste of elderberry juice even with milk thistle capsule contents in it, so one less hurdle for us. For those who lost track of her supplements, here is what we are giving her:

Whey powder (easily digested protein)
Probiotics (for intestinal flora)
Kid's Mutlivitamin with Transfer Factor (Cow's colostrum extract for immunity)
Flax and olive oil (for essential fatty acids and prevent constipation)
Milk thistle (to nourish liver and kidneys)
Elderberry juice (not sure why, but I think it is rich in iron and antioxidants and to mix with milk thistle for the taste)
Astralagus (to balance immune system)
Fish oil (have not started it yet, but it is something that Tom recommended after seeing Julia's dry and peeling lips, he also gave her a nice lip balm)

As far as chemo, this month Julia is getting a daily pill called 6MP (nice name, huh?) and a weekly spinal tap and injection of Methotrexate.
Both of these meds interfere with protein synthesis and DNA formation and prevent the leukemic cells from reproducing. They affect all quickly dividing cells like hair and digestive tract as well as internal organs like kidneys, liver and heart. That is why the nutritional support is so important, these organs need nourishment and protection more than ever.

So that's it. Julia says Hi to everyone.

Lola

Tuesday, June 10, 2003 10:27 PM CDT

Hello all,

This is just a quick update on Julia.
Today Julia had a pretty good day despite yesterday’s chemo. She wanted to go to school today and did not even want to leave when I came for her, so I ended up running some errands and getting her in 45 minutes. She still looks extremely swollen in the face and belly which is very difficult for me, she does not look like herself L Her hair keeps falling out but she still has tons of hair left.
She spent some time outside today and watched Alice in Wonderland (the new movie). Later she put together a very complicated puzzle all by herself (many tiny pieces).
Here are her side effects so far in addition to swelling and mood swings that are supposed to go away soon because she is no longer on steroids (it takes about a week to clear them out of her system) - Julia still cannot walk upstairs or get off the floor. Her new side effect is a headache. She told me that her forehead hurts when she blinks her eyes (????)
The nurse called me and told me that her spinal tap result came back CLEAR (yeah! But this was kind of expected) and her bone marrow test results should be in the computer tomorrow.
So please think or pray that her bone marrow shows that she is in remission. Tomorrow we will find out for sure!

Later
Lola

Monday, June 9, 2003 11:35 PM CDT

Hi everyone,

this is just a quick update. Julia reached her first treatment milestone - we are done with induction phase! It lasted 28 days but to me it felt like years since she was diagnosed.

Today we went to the clinic for a "fun-filled day". Julia had another spinal tap to check her spinal fluid again to make sure there are no leukemia cells there (it looked clear which was a good sign, but no results yet), bone marrow to check if she is still in remission (please pray that is the case), an intrathecal (spinal) injection of Methotrexate and Vincristine IV push. She was mad and hungry - she could not eat before the procedures because they use conscious sedation and that could have caused her to throw up. she did fine though. We had a minor obstacle - her Broviac line was blocked, the nurse could push the medicine in but could not draw blood from it. So she put some special medication inside the tube to dissolve the clot and let us have a break from all that. Daniel was there too so we went out to Ma Ma Wok and got some sushi. Julia felt a little better afterwords. She stopped steroids but their effects will linger for another week or so.

We have not got the results back from all her tests but what we have is very good except her usual very low hemoglobin. I got the results on the phone, so don't remember some of them exactly, but here they are:

ANC 2230 (WOW! that was a good one. If you remember that is Absolute Neutrophil Count and anything higher than 1000 is considered very good for people on chemo.)

HGB 7.5 (transfuse at 7.0)

WBC 8.1 (NORMAL RANGE!) white blood cells

Platelets 200+K, also normal range!

So please send Julia some high hemoglobin vibes so that she could feel better and avoid a blood transfusion. If you know of any remedies to raise hemoglobin besides iron supplements please let me know either by e-mail or guestbook or call us!

thank you all for your notes in the guestbook too.

As far as philadelphia people (read previous entry for the whole story), I am having serious doubts that these people are for real. I am going to try to get a second opinion from another psychic or a clairvoyant if I find someone I could trust. In the meantime i decided to ignore them so unless they call me i am not calling them again. They really made me sick to my stomach with fear and I have serious doubts about their supposed clairvoyance. I also talked to another woman who claims to be "conned" by these supposed healers and she sounded very angry. she spent $10K and did not see ANY results. So for now, I am taking a break from them.

On the other hand, I am excited that we are going to Tom and John for another reiki/craniosacral massage session on Wednesday. I cannot thank them enough and again I want to give them a plug here www.wholebodyconcepts.com. They are probably surprised that they are getting so many clients as they have no idea i keep talking about their work on this site. They definitely deserved the praise.

please think of us, tomorrow we will know Julia's bone marrow results. If she is still in remission as the doctors expect her to be, this may be her LAST bone marrow test! But do not be fooled by this. She is on the new medication orally with the side effects you don't ever want to hear about and 3 more spinal taps in the next 3 weeks :( But i know she'll do fine because she is stronger than the chemo!

This phase of her treatment is called consolidation and will last another 28 days.

Friday, June 6, 2003 10:16 PM CDT

Today was a bizzare day. Get ready as this entry is going to be long and weird.

We went to see a naturopath in Philadelphia area after hearing some rave reviews about the success with others. This doctor also studied 4 years in a Chinese monastery and learned the gift of clairvoyance. I am not saying any of this is really true because honestly I just do not know, but I am relaying what I was told. He, his wife and his daughter have this integrative medicine center. They help with nutrition, reiki/energy work, etc.

It was painful for us to drive all the way over there except Mark and Cheryl as usual saved us from a long and boring trip by coming along and actually driving us! (thank you, YOU!) Julia was tired because we got her up early but she cracked jokes throughout the day - that is when she was not busy whining or eating (steroids, what more should I say! thankfully we are are supposed to stop them on Monday! So 3 more days out of 28 left)

The office was located on the first floor of an apartment complex and looked like any other doctor's office with a front desk, 2 exam rooms, etc. We were greeted by the doctor's daughter Tatiana, who was wheeling around in a wheel chair (she is paralyzed, I do not know why). The doctor himself was limping - car accident - I feel a little bad that I noticed these things and could not stop my mind from wondering why in the world these 3 people are so sick? The wife also did not look like a picture of health and she mentioned that she had stomach cancer 5 years ago. But I tried to not think about that and not to let that prejudice me against that doctor.

Tatiana talked me through a very long questionnaire about Julia's family history and health history, then Julia went to another room to be examined by Tamara (the wife). Tamara was checking Julia's reflexology points (not the neurological reflexes, but energy points). When she moved from Julia's neck down to her feet, she made negative comments about Julia's body being so out of whack. I wanted to scream - of course, she is out whack, she's got leukemia and she is getting chemotherapy big time, no wonder. But I kept quiet. Then Tamara asked to Julia to flip over to examine her back. She gasped after looking at Julia's spine and told me that one of her disks is twisted (I do not remember exact wording but that is the meaning I got). She told me that it looked like Julia fell in her early childhood and twisted a disk. I honestly could not remember Julia falling that hard, she had always been very cautious, and only once in her life I saw blood when she fell on Baltimore Aquarium tile and split her lip. Also she once fell of a very low platform bed when she was 7-8 months old - I was nursing her and fell asleep and she rolled over but she did not cry for more than a few seconds.

Then Tamara proceeded writing down her findings in Julia's chart marking up reflexology points that came up "positive" for something bad. It was a long list. On top of her chart she wrote "Blood related disorder" and told me that she did not want to write "leukemia" because she was not sure that Julia did have it. I was a little beside myself because there is no doubt that Julia does have it, but then I remembered that my mom talked to her phsychic back in Ukraine on the phone about Julia's leukemia. That phsychic mentioned in almost exact same words that she was not sure that Julia had leukemia. Unlike today's visit mood, that Ukrainian psychic was extremely positive sounding and told my mom that Julia will do fine and all side effects will go away when Julia is 16! I thought that strange that 2 totally unrelated people, both somewhat psychic said the same thing independently. What else can it be besides leukemia? The doctors did not doubt this diagnosis for a second and her blood and bone marrow tests pointed to white blood cell DNA damage and wild reproducing of those cells. That is leukemia. If anyone has any idea what to make of that, please e-mail me!

The next phase was getting "curioser and curioser". Julia went to another exam room and was told to sit. We read her a book to keep her occupied. The doctor and his daughter were in the room, about 10 feet away. The doctor was just looking at Julia, sometimes he closed his eyes, while his daughter was scribbling notes. They DID NOT exchange any words. I knew that they are both supposedly clairvoyant, but it was bizzarre to watch. Throughout the whole time that we had been there, the doctor did not talk to us directly and did not even make much eye contact. This struck me as add but until we got home and I processed some of the events more rationally. This lasted for another 45 minutes - 1 hour. Thankfully Mark and Cheryl went out to get a pizza and Julia was happy just gobbling 2 slices. I also brought her juice and meds to take there (her morning dose). After waiting for what seemed like hours, the team came out of their consilium. Again we were faced with Tatiana who laid out the results to us.

She went into a great detail about Chakras (energy channels in the body) and some other general info which I found boring and wanted to get to the bottom line - what can they do for Julia? Finally she went through the intro and gave us the verdict. The first 4 of Julia's charkas are not functioning. There are 7 chakras so she still has some reserve left, but the first 4 are blocked. Then she said that Julia's problems started when she was very little, probably an infant. She said that it seems that Julia was faced with incompatible energy presense (immediately, guess who came to mind! I won't write it here because too many people are reading it, but if you know us good enough you'll understand immediately what I mean. Hint:think who Julia spent a lot of time together, OK, I'll say no more!). Tatiana said that there is no such thing as negative energy, but some people are incompatible with each other and Julia was using up her reserve to compensate for the drain of energy. That is when she became susceptible to the fall and injured her spine (crooked disk). This caused misalignment in her spine that affected the flow of spinal fluid and caused immunity problems that might have caused the blood problems. Disclaimer - I am just relaying what I heard, I have no idea how much it can be trusted. Personally I am very torn.

Now, to go back to the medical issues. Julia's current problems are improper digestion because her digestive system is out of whack, etc. She is to give them a 24 hour urine test and saliva test and iodine disappearance on skin (tests for deficiencies). Personally I do not think that a person on chemotherapy can perform adequately on these tests, but that is just my opinion. Based on the info, they are going to give us the diet requirements - what, when and how as well as digestive enzymes. As far as energy work goes - reiki, craniosacral massage, chakra balancing - they recommended all of the above, but I told them I have Tom and John who are awesome and close to us, so we won't be driving to PA just for that.

The main problem though they said is that Julia is under that spell, curse or whatever, the incompatible energy thing. They told me that whatever treatment she gets, she would fall apart unless the root of the problem is removed. However, they could not help us with this. They gave us a name of a religious guy (rabbi?) in NY who can exorcise whatever that got into Julia. My emotional response was mixed - the fear for Julia and the desire to do whatever it takes, then the doubts, then the concern about the time, effort and money involved into all this. Also after all that curse or whatever is gone, another rabbi (rabbi Tverski or something like that of NY) can protect by saying prayers so that it won't come back. So it is not one but 2 different guys that produce effective result. My first reaction was fine, whatever, even if it sounds extremely outlandish, I want to try it simply because it might work! I mean it is not like chemo that is surely destroying Julia's cells and even that I did not have a hard time deciding about - we agreed to chemo immediately. In case of exorcism or prayer, I do not think we have much to lose except $$$.

We walked out of there eventually, me in bigger distress than before we got there (remember, this week we had a wonderful reiki session with Tom - in the earlier entry here - so I expected some wonderful positive experience again with these healers). We were charged a lot for this visit and they gave us some containers for urine to be mailed on Monday and other paperwork to fill out. I was overwhelmed with all that new info. I was just getting to the point where I came to peace with Julia's diagnosis and accepted that we will go through the pain to get her better. I did not really have doubts that the treatment plus our care, support, and holistic medicine would not work. These people planted the seeds of doubt and fear in my head, but for the sake of being on the safe side we must at least keep an open mind.

Cheryl immediately told me that she did not like these people and they looked like phoney baloney to her. She is straight like that if you know her. Mark was kind of saying something along the same lines, being his skeptical self. Danik and I were playing a devil's advocate for each other. Of course we were all scared and angry, angry because we are unable to verify or disqualify the new info we were given.

When we got home, I left a message for Tom. He called me and I really wanted to know if he also felt the same thing about Julia's chakras (energy channels) being shattered or not functioning. He sounded very calming and positive, as usual, and he said that energy was pulling very nicely through her chakras. He told me the same thing right after the session on Monday that he could feel her fear but other than that her energy was great and that she had a very playfyl spirit despite all that (that is an exact quote). I asked him how sure he was about Julia's energy and he told me that her chakras are verifiably functional. Tom also said that there was some disbalance, no shit, she leukemia AND chemo, but he felt the pull of energy. I was there, I saw what happened to her, you can read my all excited entry from Monday 6/2 about that (I swear that everything I wrote then was 100ccurate and my mom and others who got to see Julia for the next 3 days including her teacher in school were amazed at Julia's renewed energy. She crashed 3.5 days later, but that was to be expected. Tom said that after each session the results will last longer and longer until her chakras take over completely and she won't need them anymore). I was honest with Tom and told him everything about our visit today - my extreme fear of not doing everything possible and my doubts, etc. Danik was on the phone as well, listening and asking questions. At first Tom sounded quite open minded about this Russian healer, even though they disagreed completely about Julia's chakras. Then he started to sound more and more skeptical. He thought that we are very vulnerable to manipulation right now. He felt that these people were charging us too much money for their service and that we may become victims financially. However, he also said that it could be a real thing and what do we get to lose? He told us to decide what our limit is (moneywise) and let him do the prayer/exorsism once - quickly. here is what we decided. We will first talk to the guy in NY who does that exorcism to see what kind of money he wants. After that we will think if we are comfortable with that amount.

SOrry this is getting too late and I am tired, I have gotten up at 6 today after getting only 5 hours of sleep.
I ended up talking to the guy in NY. He told me he would do a phone session with me - it costs $40/hour - not bad. Then, we'll see from there if it is going to be a quick or long process. I hope he is not scam. Or actually my best hope that he is a scam and that whole thing is a scam and Julia had not been cursed and that we find out about that before we are in debt up to our ears. On the other hand, the situation with the curse or at least the energy incompatibility with you know who sounds very plausible to me as well. If you remember the ending of removing you know who in October and my feelings prior to that, you will understand what I am talking about. I also have a lot of negative feelings about the house we live in - no matter how much remodeling we do, I keep not liking it. So at this point, I am dazed and confused, overwhelmed and feel like I have been carrying a ton of weight all day today. My head is empty at this point and I can no longer reason, at least for today.

Another sad thing. Julia's hair is starting to fall out. I keep picking her hair off her shirt and pillow in hopes she won't see it. Her belly and cheecks are puffy because of steroids, but despite all that she is very cute.

I have no desire or energy to proof read what I wrote, so forgive my spelling errors. Thanks to all again who wrote in our guest book.

Lola and Julia and Daniel and Leah

A little update on Sunday morning June 7th. I called the clairvoyant doctor clinic again because they needed Julia's SS# which we could not remember yesterday. I ended up talking to Tamara (dr's wife). I asked her again for correct terminology to describe Julia's chakra damage. She told me that they were blocked and not working ("ne rabotayut"). I told her that when Tom did reiki for Julia on Monday, she really blossomed for the next 3 days. How can it be explained? (Tom told me that is how long he expected the effect to last in our phone conversation yesterday). Tamara said, well, see it did not last, it could not last long because her own system could not sustain it. I found it strange that Tom thought that was to be expected and Tamara thought it was a bad thing. Also I asked her how can we tell if the curse removal/exorcism ritual effect can be felt and she said, sure, you'd feel it. So will see tonight after we have a phone session with that NY guy if we can see any difference.

Friday, June 6, 2003 10:16 PM CDT

This is the background info on how Julia was diagnosed (moved from main page).



A little background info (added May 26). Before Julia was diagnosed, she went through a month of one illness after another. None of them seemed very serious and they included constipation, pneumonia (easily treated with antibiotics), leg pain, slight fever and slight anemia. We went to the ER 3 times because of my paranoia which turned out to be the mother's intuition. I was given many explanation including post-viral muscle inflammation, UTI, virus, etc. etc. I felt that it was more serious than that. Eventually I insisted that our pediatrician order more sensitive blood tests. Just a few days before the test that indicated abnormalities, Julia's CBC was completely normal except for very mild anemia which is common at her age. 2 days after Julia's blood test, I called her pediatrician to inquire about the results. 2 minutes later she called me back and told me to make an appointment with a hematologist in Children's Hospital. I kept trying to pry the reason for this appointment out of her, but she just kept saying it is probably a virus, the children's cancer is very rare, but that it was possible. I called Daniel in tears and we decided not to tell our parents (Julia's grandparents) anything until we find out for sure what she has. The next day we went to DC Children's. That day we saw many kids with cancer in the clinic (it turned out to be the brain cancer day), and the kids looked very sick there. Julia did not look like she belonged to their group. In fact, she was feeling just fine - no symptoms except for paleness - for a couple of days before this appointment. I even thought that we might just rule out all the bad stuff and go home. Of course, I took a look at her blood test myself and fished the internet for phrases mentioned there - lowered platelet count, slight anemia, few immature lymphocytes, few gigantic platelets. These signs pointed to horrific blood malignancies and I did not want to read further. However her blood counts were within normal limits - normal amount of white and red blood cells. We saw the doctor at Children's who immediately suggested that we get checked into the hospital ASAP. This was on Thursday, May 8. The same day Julia endured many pokes to get her IV started, given the fluids and other medicine to keep her kidneys working well when clearing leukemia cells. The next few days were a blur. Julia was subjected to a bone marrow test which confirmed leukemia. A couple of hours later we were relived to find out that the type of her leukemia is Acute Lymphoblastic Leukemia, the most common and curable cancer in children. We were told that the cure rate is 85-90%. Also her age and the fact that she is a girl are in our favor. Julia was given a blood and platelet transfusion before the surgery. On Saturday, she had a 2 hour operation to insert her Broviac, a central line that can be used for blood draws and IV medicine. The doctor who was supposed to do her spinal tap and the first intrathecal dose of chemo (into spinal fluid) at the same time as her surgery did not wait long enough - her Broviac surgery was rescheduled to late afternoon due to a lot of emergencies that day. As a result she had to suffer the spinal tap without general anesthesia the after her surgery. They gave her some medicine but it was not effective, and the doctors spent 2 hours doing the spinal tap. She had a screaming match and a tantrum, was hitting me hard after that (if you know Julia, it may be a shock to you but she did hit me many times). She was very angry at me for letting her suffer like that and called me "duratskaya pridura" (that can be translated roughly as "idiotic imbecile"). The chemo started. I had to learn everything fast - how to give medicine, how to care for Broviac, etc. You know the rest. The doctors always told us that she would do great and that she has a great chance and that gave us strength. We hope that she will continue to amaze everyone and come out of this even stronger than before.

Wednesday, June 4, 2003 10:03 AM CDT

Greeting friends and family,

After the reiki/massage session on Monday (read about it in the previous entry), Julia continues to be in a cheery mood and has the same sunny personality that she used to have before the sickness! Yesterday we went to the clinic for another dose of chemo (Vincristine IV push and the lab work). Dr. Guerrera was somewhat concerned about Julia's muscle weakness. She is not in pain but she is unable to walk up the stairs and when she is on the floor, she needs to hold my hand to get up. The doctor checked her reflexes by tapping on her knees and she had none thanks to Vincristine! But this is supposed to go away after the treatment is finished. He made her walk on her toes and hills and she did OK with that. He thinks that the weakness is caused by steroids (Dexamethasone) which we'll be stopping next week (can't wait). But just in case he ordered some additional blood work to make sure the medication is not causing more damage that it is supposed too. I still do not know the results (called the clinic and waiting for their return phone call).
The good and surprising part is that Julia's blood counts looked so much better, except for HGB that stayed the same.

HGB 7.7 (normal starts at 12 ), they transfuse at 7, sometimes even at 8 depending on the symptoms (extreme fatigue, high blood pressure, high pulse). Julia has elevated heart rate, but not too much and her fatigue is not excessive, although she seems extremely tired to me. Since HGB is stable and other counts started to rebound, Dr. Guerrera thinks it should go up soon (fingers crossed!). She needs higher hemoglobin to feel better and all her organs are working high to overcompensate for it.

WBC 2.61 (normal 4-10, but hers was only around 1.3 last week and 0.9 the week before, so it is a very good level for a patient on chemo!)

Hematocrit 33.4 (normal is 38 , this number represents the f blood occupied by red blood cells by volume)

Platelets 173K (in the normal range!!! and they told us that the platelets will rebound slowly, yeah!)

ANC 1390 !!!!(absolute neutrophil count, neutrophils are the natural killer cells that kill bacteria, etc. Last week it was 580, the week before 180, so it was a huge jump. The normal range is 5000 , but for patients on chemo to have over 1000 is a huge deal, less than 500 is considered neutropenic or unable to fight infection which would mean automatic admission to the hospital with fever over 101.5 I feel much better about sending Julia to school with this count although low but able to fight most infections)

The clinic just called and her labwork partially came back, it was fine. There is just one more test that checks for muscle wasting that was not ready, I will call them back tomorrow. I hope that Julia's muscles did not atrophy too much. Danik and I decided to take her for a walk as much as possible. I hope it stops raining already, it has been raining for at least 1.5 months already, almost non-stop here.

I think that Julia's count rebounded despite the harsh chemo at least partially thanks to her energy work session with Tom and John. I again want to thank them for donating their time and efforts and urge everyone who lives in our area to check these guys out (and yea, they did not ask me to advertise!) www.wholebodyconcepts.com.

Julia even ate a bowl of oatmeal with raspberries (asked for a second helping even) which did not happen for at least a month. Steroids make her crave meat and pickles and other salty stuff and she does not even care about chocolate. We had a little battle today about the medicine she has to take. It is Bactrim (antibiotic) that she only ash to take two days a week (but for the next 2 years!). It is extremely bitter and her usual juice tastes awful. I hoped that she would swallow the whole thing covered by cream cheese, but after 30 minutes of her crying I gave up. She is scared to swallow it! Eventually I mixed a separate juice with just Bactrim. Then I squeezed some more juice and added her usual Dexamethesone, Zantac, Kids multi, Whey powder, Probiotic powder, Flax oil and liquid iron.

By the way, Beth (the nurse practitioner at Rockville) and Dr. Guerrera were totally supportive of our reiki/massage experiment. Beth even gave me a copy of the article about benefits of massage for pediatric leukemia patients. It lowers stress and anxiety and increases good blood counts!!! Dr. Guerrera told me it was OK to try Transfer Factor, although he asked me to bring the bottle next time for him to examine all the ingredients. This supplement is basically filtered cow's first milk (colostrum) which is similar to human breast milk in a way that it has cells that can fight infection and these cells "transfer" this knowledge to a person who takes them. That increases the natural killer cells counts in the blood, and these cells kill viruses/bacteria and even destroy cancerous cells. The kid version of this supplement contains mutliple vitamins and minerals and Dr. Guerrera was mostly concerned about Folic Acid. Folic Acid can interfere with Methotrexate, because this chemo drug deprives the body intentionally of the folic acid that is also needed even more so by leukemia cells. But the amount of Folic Acid in this supplement is very low, so we are going to be OK (not more than found in food, but since Julia does not care about any foliage - read salad - she does not get any folic acid out of food sources).

Wow, this has gotten too long. If you read this far, thanks for checking on us.

Julia reads all the notes in the guestbook, thanks again! And she picked this silly background for her main page too. She is in school now.

Lola and Julia

Monday, June 2, 2003 8:47 PM CDT

Hello everyone,

Today was the cheerier days for us, in fact, probably the most joyous day ever since Julia got diagnosed. It started pretty well with a lot of sunshine and Julia went to school for a little while, but more amazing things happened later today. Get ready as this is going to be LOOONG!

We were scheduled to see Tom (herbalist) and John (massage therapist) today at 3:30. Check out their website www.wholebodyconcepts.com to see more about their holistic approach! They are awesome. I did not expect anything earth shattering, mostly was prepared to discuss the supplements for Julia. Tom told me last week that he and John would like to donate some energy work (Reiki, Chakra balancing and Craniosacral (gentle head) massage), but I did not know what to expect as I never had this type of work done on myself.

When we got there, Julia was at her most crankiest mood, did not want to talk to Tom despite the fact that he was very nice and gentle. We spent about 20 minutes talking about supplements and Tom gave me some more suggestions and the actual bottles with astralagus drops, ginger, and barley greens. He also recommended a supplement called Transfer Factor and I am yet to order one (he did not have any on hand). Then strange things began to happen. We moved to the porch where they keep their massage table (I used to have a couple of massages there, heavenly!). Tom told me that I can lie down on the massage table next to her and sit down on the chair and hold her hand. Julia was very apprehensive at first because she has a lot of anxiety about anything resembling medical procedures. But she lied down on the table and they covered her with a soft blanket to keep her warm. I sat in the chair next to her.

John (the massage therapist) stood at the top of the table and held her head gently, Tom was on the other side holding her feet. John told us all to relax and put one hand on my back also. I was looking at Julia and both guys kept their eyes closed for the longest time, at least 10 minutes. I almost laughed out loud just thinking how ridiculous we must look, one tiny 5 year old girl, surrounded by 3 adults, holding various parts of her body and not moving. Then Tom moved his hands slowly from her feet to her knees, then to her stomach and chest area. He stopped each time and looked like he was concentrating with his eyes closed while his hands were placed on Julia gently. He spent some time on her right hand or I should say above her right pulse. I felt very strange, but they did not say a word, so I kept my questions for later. All the while John was holding Julia's head. I could not see it but I think he was also massaging it very lightly. At the end Tom placed his hands above Julia's chest and started making movements like was collecting something and throwing something invisible away. He repeated it several times. Julia seemed very sleepy, her eyes kept closing, but she was conscious and very very deeply relaxed. I think the whole session lasted about 1 hour, but the time went fast. The most amazing thing happened after that. When the guys got up, Julia opened her eyes and immediately started chattering, in the same chatterbox manner she had before she got sick! She was talking about one of the teachers in her school (Mrs.Kazsmarksi) and some present that she has for her and went on chatting for a while. She looked SOOO good, like she was not even sick. I was so surprised I could not stop laughing. Tom and John looked at each other and told me that they felt that Julia has a very playful spirit and that she will do just fine (the way John told me, I felt like he was saying it because he KNEW and FELT it after holding her head for almost 1 hour). Tom said that Julia's energy is great and she had fear or stress feelings that he removed (well, he did not say it in those same words, but that was the meaning I got). I felt that it was magical, but in fact, it is a science and can be learned/taught. It is called Reiki/Chakra Balancing and Biodynamic Craniosacral Therapy.

Julia was very talkative and smiley right after the session, like somebody lit her up like a light bulb. These guys REFUSED to take my money and scheduled 3 more appointments for us. Moreover, Tom gave me all the supplements for free (those that he had on hand). He spent a lot of time researching leukemia and the supplement TransferFactor was recommended to him by an oncology nurse who is now a very experienced herbalist. I have to buy this one. It basically makes the body produce the killer immune cells that destroy the cancerous cells. I have to read up more on it and consult our oncologist to make sure it is safe. So as you can see this was a very exciting day.

By the way, as soon as we got home today Julia wanted to do yoga (we have a yoga tape for kids) which she did not do in weeks! She is very weak from her medications and cannot walk the stairs even with my help. I have to carry her upstairs. She also has gotten clumsy. These are the side effects of Vincristine (her chemo drug). When we have our appointment (our clinic for more chemo) with Dr. Angiolillo, I will ask her to decrease the dose. So there will be more updates tomorrow. Julia no longer looks like the picture in the photo album. Her face is swollen from the steroids that we will soon be stopping. (yeah!)
Later on when Danik came home, she talked to him for a long time and even when my mother came (Nelli), she chatted non-stop with her (for some reason, she really did not want to come near my mom in the last month. Probably because my mom was really upset about Julia's leukemia and could not hide her own tears and upsetting emotions from Julia well enough).

So thank you all again for coming to this website and thinking and praying for us. I believe in the power of prayer or positive thought and I believe it is working! So thank you all for the healing energy you are sending us.

We love getting notes in the guestbook, it really helps to know you are all there.

Love and peace
Lola and Julia

Friday, May 30, 2003 2:38 PM CDT

Hello dear friends and family,

Dr. Angiolillo called today with the results of Julia's cytogenetics test. It did not uncover anything interesting, she does not have the unfavorable translocation in her leukemia cells, and she does not have the favorable one either. Even if she did have the favorable translocation, she would have stayed on the same protocol (standard), so it does not make much difference.

Today was a hard day for Julia. She has been feeling very weak and tired. Her face looks swollen from medication and today she complained that her head is itching. I heard that the itching comes before the hair starts to fall out. She does not know about that yet, I was going to tell her when the hair loss is imminent to avoid too much anxiety too long in advance. Julia went to school for about 1.5 hours but felt tired and asked the teacher to call me right after lunch.

I feel very run down lately. There is no time in the day that I don't have to do anything and just be myself. Phone calls, medications, Julia's fussiness, etc. This Dexamethasone drug is wearing us all out as Julia has awful mood swings and wants only to be with me (surprise, surprise). I feel really bad for her today, don't know why. It is not much different from any other day, but I realized that she has been only about 3.5 weeks of her treatment that will last 2.3 years (or approximately 118 weeks!!). And we are not even in the worst phase yet (it will come a few months later, delayed intensification). At least the sun came out.

Thursday, May 29, 2003 1:55 PM CDT

Did not write for a couple of days. Julia has been feeling pretty weak - her hemoglobin is very low, but not low enough to warrant a transfusion. The doctors check her blood every time she comes to the clinic - which is once a week. We are going again next Tuesday, June 3rd (seems that we got stuck with Tuesdays from now on).
Yesterday she felt good enough to go to school for a couple of hours, but today she told me the morning that she likes to stay home. Knowing how much she loves school, I realized that she must be extremely tired. Mark and Cheryl came to visit, but at first she did not even feel like playing and talking with her favorite grownup, Mark.
It is still raining and very gloomy. I wish the sun would come out to lift our moods.

At least, Julia realized that her medications are not going anywhere and she accepted the fact that she needs to take them twice a day (along with mouth care). This used to be a major struggle every day twice a day, but now it is easier. I still need at least 1.5 hours twice a day (3 hours total) to prepare and give medicine and care for mouth and her Broviac tube, almost like a part time job.

Another really nice thing happened. My herbalist Tom called me finally (he was out of town) and we scheduled an appointment to discuss what we can do to help to spare Julia's organs from side effects of her chemo. Then Tom said that he and John (the massage therapist) decided to donate Julia some cranio massage work - the gentle head massage that helps to balance energy and relax. I was blown away by their generosity. People are very nice to us these days.

Lola

Tuesday, May 27, 2003 2:32 PM CDT

Today was a chemo day. Julia went to the outpatient clinic in Rockville since she was just getting a dose of Vincristine into her IV and a checkup by Dr. Angiolillo (Julia's main oncologist). The doctor was pleased by Julia's response to chemo (essentially she is considered in remission at her 7th day of treatment which was last Monday, yeah!). Her counts today were pretty much the same - Hemoglobin 7.7 (anemic, normal starts at 12), ANC count is 650 (it reflects the ability to fight infection and the critical range is below 500, but is way too low for a normal person), her platelets are 76,000 (came up from 33,000 last week. Not quite in the normal range, but getting there).

Julia's cytogenetics test results are not back. This test will show whether she has a "good" translocation in her leukemia cells. Based on Julia's progress, Dr. Angiolillo feels that she might have it, but it won't affect her protocol as I learned today. It will be just a good thing to know, but all kids can be treated either with standard or high risk protocol. As long as it is not high risk (longer, harsher chemo plus radiation), we can deal with this. I guess we can deal even with a high risk protocol if it comes to that, but now we have no reason to think that she will need it.

Other than that, everything is back to normal. Julia is now a sushi lover, so we stopped by the sushi place and got some takeout. Evelyn, her classmate, stopped by and brought really nice books and a great sticker album, but Julia only wants to watch cartoons. I think low hemoglobin/anemia makes her feel very tired. Also her chemo is probably taking a toll too, so I am letting her do whatever she wants even if it means watching cartoons for 24 hours, it is raining anyway.

Lola

Monday, May 26, 2003 11:28 PM CDT

Just a little note to update everyone. We had a pretty nice weekend - visiting cousin Benji (birthday party), our friends and parents (Julia's grandparents). Julia is feeling pretty good, except for occasional moodiness and tiredness. Over the weekends, we saw more effects of her steroid medicine. It makes so hungry that she wants to eat every hour or so. I am not making a big deal out of it, actually happy that she is eating well again for the first time in a few weeks. However, she grew a small tummy in just a few days and got the new "moon face" appearance. We were told that after she stops dexamethazone (in another 2 weeks), she will lose her appetite because of other chemo drugs, so I think it is good for her to put on some weight now. We finally got the medicine taking down - I mix everything in a freshly squeezed orange juice - her Dexamethazone, Zantac, flax oil, multivitamin, probiotics and powdered whey, add a couple of ice cubes and drinks it through a straw. We do it twice a day. I also changed her dressing again because it was falling apart. She did not mind it too much. I probably should not mention this because I will definitely jinx it (I have this ability, seriously!). But it seems to have gotten a little into a routine.

Tomorrow we are going to a clinic (outpatient), a branch of Children's Hospital in Shady Grove for another dose of Vincristine to be given in her IV port. She will also get a checkup and a blood test. I also really hope that the result of her cytogenetic workup is back. This is a very important step. Her bone marrow was taken on May 9th, but it takes a couple of days for the full genetic fingerprinting results. There will be some chromosomal anomalies in her lymphocytes, but some are better than others. The doctors already told us that based on preliminary results, she does not have the really bad translocation which could have put her in a high risk category. So currently Julia is considered standard risk and a fast responder because of her rapid response to the chemo (no leukemia in her blood and less than 5n bone marrow after only 8 days of chemo). However, if they find a good translocation in her chromosomes, it can put her even in the lower risk category. This means that she would receive less chemo with less side effects and a smaller rate of relapse. Please everyone cross your fingers and pray that it is the case. We will probably find out tomorrow.

So far the only side effects Julia experienced are crankiness, mood swings, peeling lips (healed already but peeling again), weight gain and probably some fluid retention. Invisible side effects are abnormal blood count that render her immuno suppressed and anemic (sometimes I can't believe that it is happening and I can describe it so calmly. Probably some kind of defense/survival mechanism kicked in in my brain!). So that's it for now.

Again please wish us luck and pray that she has a good translocation in her leukemia cells that responds well to chemo.

If you got this far, thanks for reading and good night!
Lola

Friday, May 23, 2003 4:14 PM CDT

Hello all,

I realized now how many people are checking this page, so I will try to update it each day.

Julia is very cranky all the time, thanks to Dexamethazone that she takes each day. This is steroid medicine that is used to suppress her immune system and kill leukemia cells (a part of combination chemotherapy). It makes her very moody because it upsets the hormone balance. She really wanted to go to school today because it is a pizza day and theater dress rehearsal by older kids. There are several illnesses going around in their school - 5th disease, colds, stomach virus. I called the oncologist at the hospital and he thought it would be a good idea to go anyway. Her counts are low, but not THAT low, I guess. As long as it is not chicken pox, we are supposed to let her go and enjoy school. She really loved being among her friends today.

As soon as she got home today, a male nurse came in to change the dressing around her Broviac (central line) site because it is still a little oozy, not bleeding hard, but a little bloody. Julia screamed through the whole thing even though it does not really hurt, except for taking off the bandage (it is very sticky and big). Then I tried reading to her for a couple of hours in hopes that she will fall asleep (she was tired), but as usual she resists sleep. She got some more gifts today and yesteray. I lost count of how many gifts and who sent them, which makes me feel really bad. I want to thank everyone personally. Yesterday a girl from Mrs. Horton's class, Andrea, sent her a card and a cute notepad, our friends Inna and Roma Dijour from NY sent her a cute Vermont bear wearing a doctor's outfit, with "Julia's" stitched on the front pocket. Today Taylor (her classmate) gave her a card, some books (we started reading them), and a pillowcase with smiley faces that was signed by her classmates and teachers. Getting all these cards and presents gives really warm fuzzy feelings. However, I want to ask everyone, a phone call or a card is all Julia really cares about - there is no need for expensive toys (although I like playing with them too!). THANK YOU all again!

Right now Julia had 4 pickles in a row and keeps asking me for goat cheese pizza from Trader Joe's. I am trying to find somebody (Danik? where are you, in a meeting?) to buy it for her because she does not let me go and I do not want to drag her to the store in all this rain especially.

Yesterday, Tom (my herbalist) finally tracked me down and promised me to come up with some solutions for Julia to decrease the chemo side effects. He even promised to come to our house! So far he suggested some cranio work (gentle head massage) for energy balancing. Like I said earlier, we will not be doing anything risky or experimental in terms of herbs, and everything will be approved by her oncologists. I know some people are concerned that we are doing alternative treatment when in fact, I am talking about COMPLIMENTARY that are meant to lessen side effects and not interfere with therapy.

So that's it for today. Will try to add some new pictures later.

Lola

Thursday, May 22, 2003 9:51 AM CDT

Julia's broviac has some new blood on it, so I called the hospital and they told us to get there (no rush though) today. They will check Julia's platelets (thrombocytes) that help with blood clotting and if the level is too low, they will even do the platelet transfusion. I hope it will not be the case and we'll just be sent home with a new dressing(bandage). Also different chemo drugs that Julia is receiving slow down healing and clotting which also may be the reason for the problem.

Other than that, we are OK, managed to wash Julia's hair yesterday.

On a funny note, the naturopath that we ended up seeing yesterday turned out to be my former co-worker Daemon! (Dr. Jones now). She left RWD about 5 years ago and went to medical school in Bridgeport, CT - one of the 4 schools in the US that combine medical school with naturopathy. She gave us really good suggestions that are safe (no interaction with chemo) such as to make broth with whole chicken (including bones) because bone marrow nutrients will leak into the broth and it is very good nutrition for a human marrow. Also she said to add maitake and shiitake mushrooms in the diet as they help with immune systems and fight cancer. She will be checking on the safety of other supplements with her colleage, a specialist in cancer and an MD/naturopath. I am very cautious about any supplement that can mess up the chemo's good effects. We will try reiki and accupuncture probably a little later when things settle down a bit.

Thank you all for coming and visiting. Later today I will sit here with Julia and help her read all the notes you left for her.

Lola

Wednesday, May 21, 2003 10:35 AM CDT

Julia seems very tired today, her sister always gets up before her and wakes her up. I think if I had stayed in bed with Julia (I ended up crawling into her bed each night because she seems scared after being in the hospital) that she would have slept until 11 or noon today.

Julia's Broviac seems to have stopped bleeding, so I just took the old bandage off and changed it like the nurses taught me in the hospital. It was easier than I thought - the hardest part is to take the old bandage(dressing) because it looks like a huge transparent and extremely sticky bandaid. Then I have to swipe 3 times with alcohol swabs around the tube and on the tube and 3 times with betadine, let it dry a little, then tap it with the gauze and put the new bandaid on. I have to wash hands and even wear gloves. I am a little paranoid about doing anything to this tube because it goes directly into Julia's vein and there is always a risk of infection. I also have to flush the tube with saline and heparin (injections) every day. Seems intimidating but it is not a big deal. It is much harder with all the medicines - crashing them, mixing with orange juice (not to mention squeezing oranges), and taking forever to get Julia to drink this concoction. I use the opportunity and crush her multivitamin, whey protein, probiotics, and Flax or Olive oil for nutrition.

She is still only interested in salty meats like cutlets, hot dogs, ham, and tomatoes. Today I am going to try giving her shrimp for a change.

Also today we are going to DC to finally meet Dr. Jones, a naturopathic physician. She told me she has several patients with leukemia and on chemo so I hope she can help Julia to get over the chemo side effects quicker.

Well, that is it for now. Thank you all who comes here to check up on Julia and thanks for your notes in the guest book, I check it every day.

Lola

Tuesday, May 20, 2003 2:37 PM CDT

Today is a good day for Julia. She looks very pale and gets cranky once in a while, but overall she is in good mood and has spent a lot of time outside today. She also got two visitors - Marina (my "cousin") and Desiree (Julia's schoolmate Jade's mom). We like to keep her away from other kids for now simply because she is so prone to infection and because kids may be a little too rough for her now.
Her Broviac tube stitches have some fresh blood on them. I talked to the nurse and she said maybe she pulled on the tube or yanked it somehow. At least there is no redness or swelling around the tube that may indicate infection and the fresh bleeding may be due to decreasing platelet count and due to the PEG shots that she had last week. If the bleeding won't stop or gets worse, we may have to go to the hospital to control it or to get a platelet transfusion if her platelet count goes too low. Right now it is in the 30s (normal is over 140), but not critically low (I think for leukemia the critical range is below 20s). Julia got cravings for salty high protein foods, so I let her eat 3 or 4 hotdogs with ketchup and tomatoes and she had some apple juice. She still does not want any sweets or carbs.

Tuesday, May 20, 2003 8:32 AM CDT

Julia feels pretty good today, woke up hungry for a change. All she wants to eat is "soup s katushkami" (grandma's soup) and tomatoes. Well, better than nothing. The doctors are telling us that as soon as she is off steroids (in about 3.5 weeks), she will stop eating all together and it will be a struggle for her to keep the weight on.
Her hair is not falling off yet and I am hoping it will just thin out despite what the doctors say (that she will lose it).
Julia's Broviac site (the tube that goes into her chest) does not look right to me, the stitches around the tube look bloody, like the tube was pulled and tore the skin a little, but it does not look infected to me. Regardless I will call the clinic and find out if I should take her to be seen. That's it for now and the day is just beginning.
(To see older entries click on the Journal button below).

Monday, May 19, 2003 3:58 PM CDT

Just a received a phone call from Dr. Reaman who performed Julia's bone marrow aspiration today. It looks that she has %<5 of blasts in her bone marrow which means that she is responding to the treatment early (a very good sign). I guess all the good positive thoughts and prayers did their job. Thank you all for coming. (To see older journal entries click on the link at the bottom of this page).

Monday, May 19, 2003 2:34 PM CDT

Today we went back to the Children's Hospital for more chemotherapy. Julia took it like a real trooper. They gave her some medication to keep her loopy and sleepy so that she would not remember the experience. Dr. Reaman (the head of Children's Hematology and Oncology) performed her intrathecal (spinal fluid) injection and took some bone marrow for testing. She also received a dose of Vincristine into her Broviac (the central line inserted into a big vein in her chest). Broviac helps her avoid being poked each time she needs a blood test or a IV medicine, it is like a permanent IV that will stay for about 6 months. Also the veins in the chest are bigger and small veins in her arms can get "burned" by the chemo drugs. Julia was really upset and hungry because the doctor told us not to give her anything to eat before the procedure. She was having some crying fits on the way home and for some time at home, but now she is feeling OK, watching cartoons while I am typing this.
Her blood counts today were very low. Her white blood counts were 0.9 (normal are 4-10), hemoglobin is 8.7 (normal is 12-18) and ANC = 180. ANC is an indicator of how well she can fight infection and normal range starts around 5000 and the critical range is below 1000. The drugs that kill the leukemia cells kill her normal lymphocytes also. She is very vulnerable and can get an infection easily. Hopefully by the end of the first month of treatment her good counts will come up a little. Thankfully there are no leukemia blasts in her blood right now, but there are probably still some (hopefully not many) in her bone marrow.
The first month of chemo is called Induction (to induce complete remission) which will be followed by Consolidation phase. After 6 months of intense chemo will be followed by another 19 months of less intense (about 1 a month as far as I know) chemo.
I have been looking for ways to boost her immunity and "life force" naturally with things like Whey powder (easily digested protein) and Flax Oil. Unfortunately she became very picky despite the doctor's warnings that Decardron that she takes everyday (steroid) would make her hungry. The only food that she wants now is something like ham from Fresh Fields and tomatoes and her grandmother's soup and adamantly refuses all fruits and vegetables and even chocolate and other sweets.
Today we had a very profound conversation after chemo. Julia asked me why does she have leukemia and I told her that some kids get it and nobody knows why. And I told her that it was not her fault just like her child life specialist taught me. But Julia did not think that my answer was right. She said the man gave this illness, the good man. I said why is this man good if he made you sick? She said that this is the man who does good things as well as the bad, for example, that's the same man who created a table and called a table. I do not know what to make of it.
Soon we'll see Dr. Jones, a naturopath, who will hopefully refer Julia for some energy work such as reiki or accupuncture to increase her life force. To this even the oncologists had no objections.

Sunday, May 18, 2003 9:39 PM CDT

As you know Julia was diagnosed with ALL last week

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