Wednesday, April 30

Sneak Preview.

David Cook's note to Regina

Paula took her time and signed this beautiful note to Regina:)


Find REgina- I took a shot of my TV screen...( Left top, lady in green )

Since we were not allowed to take cameras INSIDE American Idol studio, we could not get lot of pics , but we did see Paula, Randy, Simon, Nigel, Constantin, Dorothy Lucy from Fox LA11, Ryan Seacrest, Natasha Bedingfield, NEil Diamond and SImons Girlfriend and many more ... It was truly fun night


OH, this was amazing night. I want to thank DIane and Ken From H2H and Colton From FOX and ALl the Amecian Idol participants whow took time to take pics with REgina. ANd SPecial thanks to Paula for writing "whole" story to REginas poster, and showering her with kind comments. She is beautiful person Inside out and her kind act make me love her even more.
Regina had fun most of the time, but couple of times when people screamed and clapped , REgina started crying because her head and ears started hurting and she just kept covering her ears and asking why are people so loud.

THen , other times she just stood up from her chair and danced and clapped like there is no tomorrow. We also made poster to take with us. BROOKE WE LOVE YOU. When we heard that BROOK was out, REgina almost started crying, but then she told me It's ok. She told me she is going to Youtube to watch her sing there. :)









Tuesday, April 29

Nice Surprise.


Knock, knock.
Who's there?
Delivery for Regina?
From who?
I don't know, but it looks good...

I open the door and there is delivery dude with huge Edible arrangement fruit basket.
Head TO Hollywood( non profit organization), who got us 2 tickets to see American Idol taping,sent REgina little warmup gift :) I never seen my kids so exited about fruit. It was our first time to REceive Edible arrangements fruit basket and we all love it. :)

Sunday, April 27

Something nice happened today.


I tear up even thinking about it...
Gabriel has been wanting to go to Macaroni Grill forever.( it is Italian restaurant). He keeps talking about Mister Miller working there and he wants to see Mister Miller. Long story...

Anyway, It was hot day today. H O T. BURNING HOT. So REgina did not take her jacket with her. AND in Restaurant we were given THE COLDEST CORNER, AIr CONDITIONER blowing straight to us. So we requested table change and since Restaurant was not that full we got
"warmer" table. We settled in, got menus , Crayons. AND our waitresses name was also Regina , MY Regina thought it is very cool:).

So we were just sitting there and REgina still felt little cold. Suddenly, someone came to our table and asked me- I overheard you , Is she cold? I said Yes, she feels very cold today..

That nice lady handed Regina her green blanket and told us this is for you , and you can keep it. And she had this friendliest , warmest smile on her face I just took a one look at her and started to cry because things like this make me cry( I am crying right now). I am sure she carried that blanket with her because she was feeling cold herself, but she decided to give it to Regina anyway.

....

Now about Regina.
You guys know what time of the month it is right now?? Don't ya?? IT is end of April. April/may... Every year this time Regina has been sick past 4 years. Every YEAR. She has been sick for 7 days now and she still has not completely recovered. She is coughing, but not as much as few days ago. She has not been eating well for few days and she has been sleeping more than usual. She is not happy, or goofing around like she usully is doing, and she has this " blank Brain tumor/chemo " look on her face.

Stress is kicking in again and I think it will stay with me for few weeks . Today in Macaroni grill I ate my food, I ate appetizer and I ate half Reginas Pizza, half load of macaroni grill awesome bed and I was still hungry. So at home ate some more and Now it is 9.30 and I am about to eat more. I just hope that this feeling passes before May8th. ( wohooo It's my big 30) wohoo again ...

I just hope Regina recovers fast and I can see happy Regina soon again.

Saturday, April 26

Sunshine Kids



We had a great Saturday. Regina has almost recovered from Her cough and we decided to accept Sunshine kids invitation to their Art Exhibition. Sunshine kids is great organization and their events are always full of love and sunshine. This time was no different. Kids were presented with medals and Sunshine kids Calendars, lots of food, Limo ride to location, strawberries and sparkling soda It was fun event.

What made this event really special you ask. Well, sunshine kids had invited special Guest to present kids with medals- This special guest was J.K Simmons. He was great and very friendly guy:) I am sure kids were like - WHO IS THIS DUDE? But moms and dads knew for sure who he is. :)
http://www.imdb.com/name/nm0799777/

Anyway , it was wonderful event and we are so happy to be part of Sunshine Kids :)

MOre pictures---
www.caliwitch.smugmug.com

Friday, April 25

WHEW

I can honestly say - I AM EXHAUSTED!!! REgina is finally starting to feel better-ABOUT TIME!!! Cough is still there, but it sounds soo much better.
To make my day worse, Gabriel woke me up this morning . I asked him what is wrong, and poor Gabriel could not talk. He had no voice. I did get that he had no voice, but I gave him hard time anyway questioning him about what is going on. He got so frustrated with me he ran out of my bedroom and came back with a written sign-- I CAN'T TALK RIGHT NOW. I HAVE NO VOICE!!! lol. I just burst out laughing. So I kept him home also. Around 11 am his voice started coming back, but it started to loose it's power again before bedtime. Very weird.
(Regina and CAKE- Regina baked and decorated it )


AND NOW ONE VERY IMPORTANT REMINDER!!!!!! Please watch American Idol on Wednesday night. Regina and I got lucky and scored 2 tickets - THanks to HEad TO Hollywood organization. If I remember right then Natasha Betingfield and Neil Diamond perform ( but that could change).. After show we were promised to take pictures with some of the American Idol cast and hosts. So very cool.:) Regina will take her FLAT Regina with her and include her in pics. :)

Wednesday, April 23

Get well wishes for REgina needed.

Regina and her Best friend Heather with Flat Regina

Last week REgina started coughing. Just a try cough, nothing serious. Dr Told us that most likely she has allergies. Well, on Tuesday she started coughing like there is no tomorrow. She stayed awake pretty much all night long coughing. Cough, cough cough cough.. School has been out of question. We still do homework, and went to take a walk and ate lunch out, but she gets tired very easily, and looses concentration aslo. She has those weird GOOD mood, BAD mood moments. Poor Regina she is out of it. So I took her to doc on Tuesday and we were told that most likely it will run its course... So now I am waiting IT RUN AWAY AS FAST AS POSSIBLE.
Also, Accutane is not the best thing for her. Her skin is just so fragile...she got eczema blotches on her nose and body. I feel so bad for her. Like she has not been through enough s&^%.

Also, her appetite is gone but at least she is drinking enough fluids in.:)

Tuesday, April 22

Happy Birthday


It is my mom's 54th birthday today ( April 22nd). THis pic is taken in January 2006. That was last time I visited Estonia. I hope we can go back this year. It has been LOOONNggg 2 and half years.

Saturday, April 19

Jog A THon


Reginas school had Jog-A-Thon on friday. It is a fundrasing event for school. Parents pay money, and children sweat while running laps. Regina really gave everything on this event. She ran 9 laps, but she was upset that she did not run more :( 9 Is good!!!!! I am very proud of her. She kept smile on her face the whole time :)

Thursday, April 17

Monthly check up

Regina had her Labs drawn in CHLA. Sadly her Platelets dropped once more. they are now 70 000. Her hemoglobin was Ok 10,6. Reginas ANC is not recovering the way I FEEL it should recover. Her ANC in 1500. WHEN it drops to 1400 then we should start getting worried..

Dr Dhall consulted with Dr Finlay and they both agreed ( ME TOO) that we should NOT start chemo, since it is not very safe to do so. WE did get our Acutane, and Today was first day REgina was on acutane. No side effects yet, but I am sure they will show up soon..

Now about something very cool and exited. Soon Regina will be walking around with FULL SET OF HAIR. Today we went to see Robert Ferrari who owns hair replacement company called Ultimate Image. Today he took Reginas head measurements in a very fun way. He wrapped some plastic wrap around Reginas head, marked it with marker, then placed tape strip by strip on top of it and when it was done. Reginas custom hair mold. Now in 5-6 weeks custom made wig will be made for her. Hardworking people will sew it hair by hair to very light material that will not irritate her skin.

When wig is done, we will got to back to Ultimate Image, and stylists there will style and cut her wig and then "glue" it on her .. lol.... It will stay stuck to her head for 4 weeks and then we have to apply more adhesive and she will be good for another 4 weeks... She can swim with this wig, run, do whatever she wants. And it is made out of all natural hair... Now the best part about it is... Robert Ferrari will do it for Regina FOR FREE. Honestly, I was so happy I wanted to cry, but my meds did not let me do so.. I was just speechless, because I was not expecting it. It felt like I was in one of those cool tv shows where they bring people in and tell them,,, WE ARE TAKING CARE OF EVERYTHING. And I am just so thankful for people like Robert.

OK now. I have to work out now.. BTW, today I went to St Josephs Hospice care , and applied for volunteer job.... So, after I get my TB test done i am officially Hospice volunteer. NO I am not crazy....

Tuesday, April 15

Model in Training...


Oh gawd. ERgina has lost it. Her latest dream is to be MODEL. AND not ANY model- SHE wants to be THE BEST. Past few days all she has been doing is P O S I N G and doing it with attitude. High heel shoes, funky accessories, poses- and she is even posing when she is EATING.

Well, today She told me that SHE HATES ME. YUP. My pre teen is Hater. She hates me because I told her to clean up her mess, and wash her dishes. And she requested DADDy. She told me that I should leave, because I am mean old woman, and daddy is never MEAN... haha
I told her- I AM NOT YOUR FRIEND REGINA. I AM YOUR MOTHER, AND MY JOB is TO EDUCATE YOU, and TEACH YOU WHAT's RIGHT and WHAT"S WRONG....

She still hated me after that Yada yada speech. And 10 minutes AFTER HATING ME, she went back to loving me

Monday, April 14

Exiting news.

Flat Regina in Peking Airport ( China)
First very exiting thing is- REGINAs HAIR IS FINALLY STARTING TO GROW. It looks so adorable. It is only millimeter long,but I cried when I saw those dark spots on her head. I did not think that hair growing back can be such a emotional thing for me. When It fell out I did not feel sad, It is just part of process and it happens to almost everybody. But back then I never thought that we would make it this far that I COULD SEE HEr HAIR coming back. She is exited also. She wishes that her hair grew faster. :)

Gabriels Snake In Peking Airport lol

AND my second exciting news is- REGINA and I are going to American Idol Taping on April 30th. WOHOOOO. It is a dream come true for me , Regina is just exiting about it. :) I wish time went by faster :)

Yeah..

I was browsing through channels and Gabriel spotted 10 Years Younger show on TLC. He let out this wild yell, and told me--- STOPPPP, I have to see it. It's my favorite show MOM!!!

He cracks me up every day with his weird sense of humor....

Friday, April 11

All his bags are packed...


and he is ready to go.. well, he already left . Yes, my dh is off to Asia again. Regina did not handle him leaving this time very easy.
We had dinner in Encounter restaurant ( by LAX) , and during dinner Regina started crying and told Nick that she does not want him to leave, and that she will miss him tooooo muuuch. She lost her appetite and did not eat anything. Poor Regina. She loves her daddy very much and was very sad to see him go this time.

Now about Encounter restaurant. Restaurant itself is beautiful. It is under construction , but inside is finished.
Very contemporary and views to LAX. BUT food there is overpriced and not the best food ever. Kids meal there is 8 dollars plus drink - 2.50. Ridiculous. Mac and cheese was out of box and NOT from scratch. My wild mushroom ravioli was delicious, but not worth 20 dollars. My husband had new york stake, and it was NOT ALL THAT. 30 dollars for stake that was tough- medium rear but seemed like meat came from old cow...lol Anyway, it was nice, but COME ON?? Dinner for 2 adults and 2 kids costed us 100 dollars plus tip AND service sucked big time. Our waitress was slow and nowhere to be seen when we needed her. We prefer Chili's all the way. Friendly service, tasty food and great prices :)

Wednesday, April 9

Yosemite





This is how my kids feel about Yosemite. heh.

We decided to drive to Yosemite to spend our spring break there, but our vacation was cut short since weather there was bloody cold and kids showed no interest taking hikes and having fun in nature. We ended up paying penalty fee after checking up day early lol... Saving money is not our strongest quality...

BUT upsis aside, Yosemite was beautiful. Waterfalls, wild nature, old trees, wild flowers, SNOW and 40 degree weather.. It was beautiful.

Thursday, April 3

More Crescent Healthcare Drama.


Oh Drama. I Appeal to drama. How weird, that something so simple can make my day go wa wa wa wa waaaaa.
Anyway. Crescent healtcare ( CH), is delivers REginas line care supplies home- Heparin, saline, stat locs, alcohol swabs, tape removers, end caps, and gazillion other things, so I can take care of Reginas central line at home. Today is April 3d, Right???

I called Ch this morning to request couple of items for a month. In few hours I get a call back from our "girl". First thing that come out of her mouth is- Do you know that this is like third time within this month we have sent you supplies, it is too often. We only do it once a month...

WHAT? It is april 3'd sweety. Last month you sent us twice, and you did not even mention that that is your policy.. So she went on an on an on and on and on, and told me to get my inventoy straight and order everything once that I need for Dressing change. I about lost it, not to mention I forgot to take my antidepressants this morning,..lol
I told her with slightly raised voice.. Listen. I don't know if you have daughter with cancer, or loved one, or ever had to take care of one. But Do you really think that ALL supplies end same time, so even thought I have 100 alcohol swabs and 4 flushes left I still should order another 100 alcohol swabs? Sometimes you send me 60 flushes , but only 30 ends for flushes, and I use 4 flushes per day, so I only have enough ends for how many flushes??? sometimes you send me only 2 blue antibiotic disks, Eventhough I ordered for a month witch is 4?? I have been with your company since july 2007, and how many times I have complained that I do not get enough products for a month??? hmh? So , Please send me things I need right now, because I have your handbook here with me and NOWHERE it says that YOU ONLY DO ONCE A MONTH HOME DELIVERIES???? Wher is it?? Pinpoint it out to me , please??? One of your companies missions is to - WE are committed to proiding services that are responsive to the needs of our patients and their families, physicians, and employees....-- so please be responsive to Reginas needs.


Anyway, I just had to let it out. I am still furious. her company is not even delivering it straight to my door- sometimes they use USPS, or fed ex... I think... So what's the deal anyway.

I am not saying that I had no fault, but seriosly, I ordered supplies last month twice because they sent me wrong thing,, And this month once, because I do not like to order things I DO NOT NEED. They just recalled heparin flushes last month, and THAT WAS THEIR FAULT , not mine. They had to make that extra delivery.!!!! So , there ya go!!!

But yeah, Heparin flushes were recalled to do contamination, and I was flushing Regina with that heparin solution for 7 months. Nice,,, Should I start a lawsuit too???? I just need some money...


Prefilled syringe heparin flush recall

Yet another heparin recall was issued today, this time for prefilled heparin flush syringes manufactured by Covidien. Certain lots of the Monoject Prefill Heparin Lock Flush Syringes were recalled due to fears that they may be contaminated with the same fake ingredient which has led to severe allergic-type reactions associated with other forms of heparin. The lawyers at Saiontz, Kirk & Miles, P.A. are reviewing potential prefilled syringe heparin lawsuits for any individuals who have experienced problems which may be related to the heparin flush.

Tuesday, April 1

Yosemite Information .


I know few of you have been to Yosemite. Please share your experience with me.
What, where, who. Some good hotels? Motels? Must see places?

We wanna get away from Laguna Niguel....