Monday, August 30

One more week

One more week and we have to say good buy to our sweet home for 5 months. Hope is there and our expectations are high. We BELIVE that cure is there and we give our best to stay positive, but the same time we are prepearing ourselves for the worst. I know, We have to live one day at a time, but facts are there . She is not the only PNET case. BUT she is the BEST CONDITION PNET case I have seen so far. And I hope she will stay that. :) Stay strong girl. You need to stay strong for youself. :)

I want to take a moment and thank all my good friends who have been praing for her/us. It really means lot to us. I'm really sorry I havent sent thank you notes for you. But know, your cards, gifts, letters brought joy to Regina. Thank you.

Kathleen: Thank you for being such a great support. You really suppyed us with the best information available, and gave me great links about memphis. I hope your son continues to do well. :)

On a different note. My headaces are back. And this time stronger than ever. My CT scan result came back normal. There is nothing wrong with me. My knees are hurting and have burning feeling, my body feels hot all over, but I have no fever and those headaces just will not leave me alone. I got some meds, but they are not working. I had full physical done. EVERYTHING is fine- I mean everything. There is nothing wrong with me. But there is SOMETHING going on. Something that doctors can not catch. And I'm starting to get worried. They are giving me meds, but for what? To get rid of pain? But why do I have pain. There must be logical explanation for what is going on. But until then I just keep hoping it does not get worse. We don't need more problems now.


Honey- Please come home soon. I miss you. :)

Sunday, August 29

My vision

I have this vision- woman whose daughter is undergoing treatments to make her Cancer free s writing something. She is writing all day and most of the night. She continues writing even though she feels tired. She write and writes and write- nothing seems right, words just don’t rhyme. She looks at her kids sleeping and suddenly something occurs to her. She starts writing again and when she is finished , she falls asleep on the table- just next to her creation.

While she is writing that something all sorts of thoughts swirl in her head. In her vision she sees birth of her kids, first everythings- steps, laughs, sleepless nights. She sees how they grow up and go to preschool and then it stops. She starts crying but keeps writing- suddenly all she sees is hospitals and sick kids. She sees the day her daughter was diagnosed with cancer. Her thoughts jump from one even to another. She sees her daughter reveiving radiation/ chemo treatments. She sees parents waiting in waiting areas, hugging theyr kids, crying . She sees hope, she sees desperation and depression. But despite all the heart braking sadness she sees a light that gives her hope that her daughter will survive. She sees people reaching for her and wanting to help and she sees how her daughter day buy day feels better with her ups and downs. She is still not sure what future brings, but she realeyes that she has to live one day at a time and not worry about tomorrow because she does not know what tomorrow brings. But she still has this dream of better and happier tomorrow . And the tomorrow brings nothing but laughter and love.

She wrote a song but how can she make the world to hear what she has to say??? She has lot to say but world is full of people who all have to say something and one more just makes it even more difficult

Saturday, August 28

Hot weekend.

Sorry I havent updated for a while. I'm single mom now- Just kidding. My dear Husband went to China for a week to find some good customers who will buy his and his teams creations( dsl microchips, or something like that-I'm to stupid to understand all the stuff he is doing). SO now me, my sister and my 2 lovely kids are trying to do something creative like- ah, I even dont know what. lol

Regina continues to do well. Her hair is growing back REALLY fast. And she is exited about it- of course, she is a girl. Gabriel dont understand why she does not have hair and makes a comment like- REGINA IS A BOY, BECAUSE she has no hair. And guess what , Regina starts crying and is really upset because gabriel called him a boy, and it takes me while to calm her down because she is just that upset about it.
She is eating well, talking and doing other activities well. SHe looks like happy and healhty almost 5 year old. ( sight) Yeah, I wish it was like that- she is happy, but how healthy can she be ? Is child sick when she has cancer? Or not? IF somebody asks what does she have should I say she has brain tumor- but she really does not have it anymore. I told her story many many times- sometimes I feel like everybody knows about her( but they dont know of course) but I really havent thougt about how to adress her " operation PNET" adventure. She is happy and healhty 5 year old with no evidence of cancercells in her since june 4th 2004, and people ( who have no Idea about cancer treatments) get confused because if there is nothing, how can you radiate, and where the medications go and I have even got recomendations like- just wait for a year and see if it comes back- WHAT??? WAIT, and make her go through the same thing again. Sorry, I get ragy about comments like that. Better say, oh, I'm sorry, I dont know what to say, or explane it to me better , so I could understand what her type of Tumor really means. But really, I have gotten some pretty grazy suggestions from people I better not mention. :)

Ok that is it from me today. I'm going to scrapbook today again. I have so many pics and so little time. And I'm starting to run out of supplys.


Wednesday, August 25


Itching stopped last night :) GOOD!!!

Today I'm going to see my chyropractor to get one last upper back /neck adjustment. ANd after that I should feel like new person with new back.

Regina continues to do well. I think she gained some weight which is good of course because she will loose lot of the weight during the chemo.

I was just examining her head the other day and I notices a little knot close to her scar. It is under the skin and you can barely notice . But If I touch it I can feel the knot.. I'm not sure if it was there before or it is something new. I'm not sure because whe was wearing a hat or bandanna all the time, and now she is not wearing anything and I notice all sorts of stuff about her head.( scars , discoloration etc) . She is not complaning any pain and she still acts the same but I still wonder what it is.

Tuesday, August 24

Our stay here in CA is almost over.

We got a call from Linda in Memphis and she said that Regina has apointment on Sept 8th, whick means we have to fly back on 7th instead of 8th. I dont understand why did they have to schedule her on 8th. And it is afternoon apointment with Dr Gajjar. I told Regina that we have to get back soon and she was about to start crying because she is not ready to leave. :(

I had CT scan today. Nothing to worry about. I had really bad headaces because of stress and my doctor told me to get a scan because it'll give me some piece of mind that I'm ok. I know I'm fine, but those headaces.... everything about heads makes me shiver.

Edited to add: It is 4 hours after CT scan and I am itching all over my body. I'm thinking it is maybe because of nerves, but it could be hives. During CT scan I was not nervous but while it happened I felt this awful heat waves attacking me from head to toe. It was very weird feeling. I just hope itching will stop.

Saturday, August 21


For a week now Regina is being really good about not wearing bandana or hat or scarf to cover her scar. She said it is much better without hat. :) It took some time but she did it and I'm really proud of it. Before she even slept with hat on because she was afraid people think she has ugly head. :(

Today my husband wanted to take Regina to Ikea. Regina dressed up and was ready to go. BUT then My DH said that REgina Has to wear a hat or something, othervise he will not go to Ikea to have lunch with her. Regina was about to cry, because she did not want to wear anything and it took me 20 minutesto make her wear bandana. I was about to cry because I saw that Regina started to get frustrated and did NOT want to wear anything. Then my dh got mad at me because I did not force regina to wear hat. What is his problem . Who really cares what people think. His whole thing is about people get grossd out when they see her scar. I DONT CARE WHAT PEOPLE THINK. Regina is our daughter and anything else is BS. If she wants to scream I LET HER, if she wants to eat something I dont have at home I GO OUT AND GET FOR HER. If she does not want to wear had- SO WHAT. SHe has the cutest bold head and looks good without hair.
So Honey- get over your fears and let Regina live normal life. I don't want her to have complexes because she HAS TO WEAR A HAT everytime she goes out.
I love you sweety( dh). But it is not always about you.

Thursday, August 19

Hard morning.

I went to doc's office today to make appointment to get full physical. Scheduler told me that they dont have anything before september 8th, which is the day I go back to Memphis. SO right there, in front of that scheduling table I started crying. I started telling her why I need apointment sooner and what is going on with Regina and I cryed. I felt bad crying but I could not stop. She understood and told me that it is ok to cry and she made apointment for me on Monday. She rescheduled somebody elses apointment. Thanks . It really means lot to me.
I feel better now but still feel like crying. :(

Regina is coloring now. She has taped the pictures she colors on the family room wall. And I allowed her to do that. What a good mom I am. And she is getting really good at coloring and drawing pics. She draws like 7 year old. Details, details, details. And she is a great copy cat. What ever you draw she can draw. She is our little artist.

Gabriel is in daycare now. I want to spend more time with him, but the same time but I just feel too tired to play or do other activities with them. I love my kids and husband and I hope they forgive me for me wanting to be alone now for a while :(

Wednesday, August 18


It's been while since I last updated.Regina is doing great. She enjoys Home time with her family( me,Nick,Gabriel, Sija) . We wanted to go to Disneyland, but right now Disneyland has blackout dates for California pass holders. We are going to disney next week. :)


It's been while since I last updated.Regina is doing great. She enjoys Home time with her family( me,Nick,Gabriel, Sija) . We wanted to go to Disneyland, but right now Disneyland has blackout dates for California pass holders. We are going to disney next week. :)

Tuesday, August 10

No more coffee, no more tea...

While in Memphis I started drinking coffee to keep me awake when needed. I had some health problems in past and my doc was strongly against me usinc caffein( sp?). Sorry doc, I had to.
But now I have been caf. free for 3 days and headaces I got are horrible. I had to stop drinking because instead of making me awake and aleart , coffee made me sleepy and crupmpy and irritable. I really liked the taste of coffee, but I had to stop because of my organism did not tolerate coffein. :( By, by. Now , I have to find a way to get on track with my eating. Food just tastes too good. Nuts, trail mixes, chips- JUNK tastes good. I still eat my healty food, but I overeat and I snack a lot. :( My jeans are allready to tight and I hate it. :( . I started exersising again- not as much as before but I do my 30 minutes of cardio every day. But better that than nothing.

Regina keeps doing great. She really wants to go to back to school, but with all those germs I would not risk , not even for a day. I dont want her to have fever or cold or whatever illness because if she gets something we have to go to back to hospital. :( WE dont want that.

Gabriel is sweetheart. He has cutest smiles and he gives best kisses and hugs in the whole world. I'm so sorry sweety that I have to go away from you again. :(

My husband is also doing great. He is great help around the house and I'm really proud of him. He is a great parent.

My sister misses parting and friends in back home. Her b-day is in August 13th. I'm planning taking her to restaurant and night club after that. We'll see. FRIDAY and 13th. No good can come out ot it... lets just wait and seeeee.

Sunday, August 8

Family! been home since Thursday. It is really nice to be home. Regina allready had her FIRST EVER sleepower with her best friend Heather. Heathers mom said that they played really nice the whole night and when it was time to sleep they continued their conversation until 11-12 PM. In the morning, after I went there to pick her up, she did not want to leave. SHe started crying in the car and told me that she wanted to be with heather all the time. . :( Sorry, sweety.
And H. Is such a nice girl . I'm really happy that Regina has her as her best friend. B. Is doing really great job taking care of H.

My batter with food is never ending. I CAN not stop eating- snacking. I thought it'll get better after I get home, but no, I still want to eat 24/7 and If I'm not eating, I'm thinking about my next meal- how bad is this?? I want help, but I'm not sure what kind of help should I get. ???

We went to see movie The Village. I loved it. Really good and full of suspense. :) Go see it if you havent yet.

Wednesday, August 4


Hurray!! She is done with her radiation part. I'm so proud of her ! She is such a great kid and smart and beautiful and.... REGINA!! YOU DID IT!!! You finished your radiation!!! And besides not liking her favorite foods , she has no other side effects!!!
SHe is also exited! We are sooo ready to leave this place for a month and live normal lives for a while. And I'm really exited to go back and eat healthy again and work out and just GET DRUNK and party and celebrate until I can.
But we'll be back in September for 4 monts of Chemo. :)