Friday, May 30

...


Name of the day- Nick Cassavetes- dude who directed " My Sisters Keeper".
I know some of you have seen " The Notebook", His mom Gena Rowlands is one of main characters. I cryed my eyes out when I went to theater to see that movie. And Not to mention- I HATED movies like that, I still hate movies that make me cry. Not because they are badly directed, but because they make me feel sad and I dislike feeling sad.

Today I HBO'd another one of his hits - Alpha Dog (Justin Timberlake). I wanted to go to see it when it came out, but never found time to see it. This movie is very dark and has some FUCKING language and Pg13 scenes. This was my kind of movie- Sex, drugs and gangsters.... It was longer than I expected, but story itself was very interesting... Very different from my "world". Tomorrow I try to watch JohnQ- another one of his movies.


Regina often talks about "Mister Nick" and ask me if we are going back to do some more acting, because she really likes it. Today I caught her in front of mirror talking to herself and making all sorts of faces - Angry, sad, mad, happy, and so on... Maybe she finally found her calling.. Who knows.


And now something very exiting!!!!!!!!! Regina went to swimming today very first time . She has not been to swimming pool for a year, and TODAY SHE DID. And she was so happy.:) She is not the best swimmer, but she tried hard, and she was so proud of herself :)
I hope this summer will be more fun for us than any other summer before :)

Thursday, May 29

Chemo has started.:)


REgina has been on a temodar ( oral chemo- 3 capsules per night) since monday. I give her anti nausea meds first and then chemo. SHe does pretty well with it. She does not complain or whine or cry when she takes it. She just does it. Makes my life much easier :)

Regina and Gabriels school had open house today. Open house in our area means- Every classroom is decorated with childrens work. AND what I find very important- ALL children have equal amount of work displayed. I know Regina missed lot of school, but for my surprise all her projects were displayed in classroom.

Gabriel is funny. He took a 'TO SHOW MOM" list, and started checking things off without showing me where his projects were... lol.. WHen he got to note - Please offer your parent something from snack table- GABRIELS RESPONSE WAS- I do not know what you want , so what do you want?? Lol typical men.

One thing that I do not enjoy about open houses is Masses of parents. I get cold sweats. Shcool has 600 something kids, each kid brings one or 2 parents, plus, grandparents, guest... and for me that is stress . I like people, but I can not concentrate. I wanted to get more into my kids artworks, and writings, but I just wanted to get out of there back into our quiet and empty house. Weird. I really do need vacation..

But other than that, I am very proud of my 2 kids. They both are interesting individuals. I have noticed that Regina is more and more outgoing and happy. She knows all First graders and talks often about play time during recess with GABRIELS classmates. All Gabriel talks about is his friends and funny things they do in school.. When I ask him what he learned in school- his answer is usually like this- I am not sure, it was lot of stuff, but I knew it allready...( mister Know it all...;)

Saturday, May 24

Avastin-

This is IV drug Regina will be on starting on 2 weeks. It is not Chemo drug. BUT IT does have few side effects and one of them in internal bleeding. I am not sure HOW much our insurance covers it, but I am sure not much. It is pretty amazing though.
Avastin is bevacizumab.

Avastin is an angiogenesis drug. To start angiogenesis, a tumor sends out signals to blood vessels. These signals cause new blood vessels to grow toward the tumor. Once these new blood vessels reach the tumor they provide the supply of blood that provides oxygen and nutrients to the tumor. This helps the tumor grow. Avastin is though to work by blocking one of the key signals that causes angiogenesis, a protein called vascular endothelial growth factor. This may allow Avastin to affect the tumor in different ways. It may cause the blood vessels to shrink away from the tumor, blocking the oxygen. It may also cause the existing blood vessels to change in ways that help the chemotherapy reach the tumor more effectively. And, it may interfere wilth the growth of new blood vessels, helping to block further growth of the cancer. ( copied from www)

Thursday, May 22

Just a derpressing blog.


sometimes I just need to let it out. I do and i ask you to not to take it personally. I understand that sometimes you do not understand what I am experiencing emotionally and physically I understand that you sometimes ask pretty tough questions and I do not mind answering. But what I do not understand is following. You guys have to understand only one thing- Regina had 2 brain surgeries. She had maximum dose of Radiation to her brain and spine, she had intense chemo which destroyed her hearing and it is getting worse by month. And with that said- You have to understand that Regina does have disability. As hard is it for me to admit, it will never get better. I always have to explain to you why Regina behaves this way, or why she does this, or why she is afraid of you, or why she can't hear you, or why she has sudden outbursts.. YOu think All kids do this, it is just age, OH, she will grow out of it..... You have no Idea how many times I heard that last one- Oh, do not worry, It is just age.. She will get better... Oh, really??? Are you sure??? Do you live with us 24/7 and see what is going on? Do you see how much explaining I have to do every day before she goes to school?

You have no idea ( I know few of you do understand and thank you for that ). IF you see REginas brain up close and personal, and then Look healthy brain- YOU WILL UNDERSTAND. But I do not want to put you threw this drama. You all know how healthy brain looks like. NICE, defined, Perfect...... THEN you see REginas left frontal and there is nothing nice and defined about it. I honestly do not understand HOW SHe StiLL FUNCTiONs tHE WAY SHE DOES. She is amazing and I love her to pieces. Her kisses and hugs make up for all imperfections she has. Her sweet voice telling me I love you Mommy, But I love daddy more when You make me clean up my house makes me just smile.

Anyway, I would go on and on and on and on and on, but I just ask for you understanding. I know this will be not my last post about this issue, but I hope it will be not as depressing as todays.

Wednesday, May 21


Finally, at last! From that speck on that clover
Their voices were heard! They rang out clear and clean....( Horton Hears a Who)..

Regina had an MRI last night. Today we went to see Reginas doctor to discuss our further plans. Reginas blood counts are great. But.....

But but but... I am not very happy about Reginas MRI. I should be. Radiologist reported- NO change in scans... BUT again, there is that BUT. Dr Dhall reviewed Reginas scans and he showed me tiny quiet bright spot. Just coupe of millimeters big. But it is there and we do not know what it is. That pretty much was only change in Reginas brain. I was hoping dead tumor had dissolved little more, but not, it is still there. And that tiny spot was in the middle of one of those dead spots. Usually in MRI everything that is highlited with Contrast is NOT SO GOOD. But this spot could be many things. - Necrosis, maybe that part got more contrast ( dye), maybe it is something else, BUT it could be new tumor. There nothing much we can do. IF it is indeed cancer and it decides to grow, then Regina will get symptoms pretty soon, since PNET is pretty aggressive from it's nature..

We just hope it's nothing big. We do not like waiting game... Since Reginas counts are good, we are going to do Oral Temador ( chemo) in low doses, and in 2 weeks.. and there will be another treatment available that we will start in 2 weeks and do it every 2 weeks. ( non Chemo).

So there you go. Regina also had aerosol Pentamidine ( spelling), to protect her lungs. She hates this treatment. This makes her head hurt....

Monday, May 19

PMS


Yes - Pre MRI syndrome is kicking in big time.. It has been present for few days, but today feeling is strong. I am worried and stressed about REginas tuesday late night MRI. She has been doing OK, and I should have no reason to worry, but I can't help it. It is my job to worry.

School is still struggle for Regina. there are mornings she cries for few minutes before she is ready to go to car. I have asked her if someone is making fun on her, but she refuses to tell me. OR she is not recognizing when people make fun of her. Something is going on, and I will find out. I told Gabriel to keep an eye on Regina , and he does. He tells me everything what goes on during lunch breaks. Once there was one boy who told Regina that she looks weird... but REgina is not confirming it... SO there you go.. SHe keeps everything in her and to get stuff out of her is just a struggle.

On Wednesday and Thursday we have to go back to LA for more Doctors appointments... On Friday Regina has dermatologist appointment. THere are some very uneven moles on her body and it makes me worried. Kids and people in General have had chemo and radiation therapy can get secondary cancers and one the most popular one is skin cancer, so that is one reason we do not visit parks very often or do playdates outside.

Anyway, keep your fingers crossed for best MRI results.:)

Diana

Hope this video makes you smile ;)

video

Friday, May 16

Reginas "Star" moment.

On a set with Nick Cassavetes and Evan Ellingson ( CSI & 24)
On Wednesday Regina finally got her few second STAR moment on My sister keeper. Her Scene is with Evan Ellingson ( Jesse). REgina is sitting on waiting area and browsing threw magazines. Jesse has to look at her for couple of seconds most likely because he just wonders how these kids are doing. This is pretty close up shot with REgina.

I am very proud of my Girl.:)
(One of the Hospital Prop walls)

Thursday, May 15

Tired....

Regina and her Panda that she got from My Sister keeper set.
Today was one of those days I rather not have.. it started out fine, but after 2 hour drive to Inglewood, 8 and 1/2 hour wait in My SIsters Keeper set we were sent home, since it took them longer to FILM OTHER SCENE , and since REgina is only 8 years old , she can legally work only 8 hours. Letme tell you... I was pissed but oh well, this is entertainment business, you get those "days" and you have to deal with it.
Regina is ok. she did 3 hours of school, played DS, read books and ate junk food. She told me she loves it.
I told her this is her last day, and she started crying in car. SHe told me that she wants me to find her new "Job". Oh boy....

and scene they were filming today was depressing- very depressing. Lets just say... you never want this to happen to your kids.

Monday, May 12

Busy times...

My birthday Belly Dancer in Cabaret Tehran- specially ordered for my Birthday.

Whew.. It has been very busy couple of weeks for us. Longer updates later.
I just want to let you know that Regina is doing good. Not great. her cough is still there and most likely it is due to some allergies. SHe feels great and is full of energy.

On My Sisters Keeper everybody knows her name and she has made some great friends. Things are in fact that great that Director Nick wants to do some CLOSE up shots of Regina, which possibly means that she will be clearly seen in My Sisters Keeper .. It is pretty big deal for us. Nick And Regina played some silly games on set and REgina was laughing and cracking up at his silly jokes like he is her idol or something.( Director Nick)
I feel sad that this is last week of filming for Regina. To be honest, it has been fun. We made some great friends, met some amazing people, and ate great food. I know Regina will miss all this also.
I am not sure what happens if there is another

Friday, May 9

Pretty LUcky..

On the set. BTW, those of you who watch CSI Miami.... while ago there was scene with HOratio Cane and His son( and drama around it ), that blond boy is alway in this movie. He is so adorable,and very nice. I did not get a pic with him, but take my word to it.

Production actually fired someone because he was asking very inappropriate questions from children ( about their outlook ), Most likely he thought that we are all PROPS and not cancer patients. That 's how much these people in there care.!!!

Reina, Cameron, Flat Regina and Precious.
After IT'S A WRAP. Cameron came out of her room and took some pictures with kids and mentioned to REgina that she has grown taller . SHe thinks month ago Regina was MUCH shorter. hehe. Abigail Breslin and flat Regina. She s so sweet and cute. Regina kept showering her with questions like- Is cameron your Real mom, Did she really hit you.. etc.... lol And she did not get frustrated with Regina. She just kept smiling and answering questions.

http://www.imdb.com/title/tt1078588/

AND this is THE NICK!!!
Nick Cassavetes- Director who runs on Energizer ( I think). TO get Regina into shooting mode , he played candy land with her, and then after filming was done, He and REgina played catch for couple of minutes.. It was so adorable.

He is one of the PRs ( I think), He's job is to tell- QUIET, Reset, rolling, QUIET, NO WALKING, SHHHHHH, SHHHHH,SHHHHH, SHHHH, ROLLING, Reset..heheh

Wednesday, May 7

Happy Birthday to MEE

On may 8th, 1978, on a beautiful spring day Diana was born..hehe. I welcome myself into 30's club... DOes it mean that I have to stop on Junior Isle now? does it mean, I have to stop coloring my hair purple?? Oh gowd... Life is beautiful!!!

BTW, REgina is doing great. She has 3 more filming days left with My Sisters Keeper. :)

Monday, May 5

WOHOO


Reginas "power" line removal was a success! We started driving to LA before 5 AM. We had to be in admitting 6 am. After admitting we had to wait almost 3 hours, and FINALLY 8.30ish Regina was given some Sleepy medicine... She was wheeled away from me into surgery area. I was sent into Post Op waiting area. After 20 minute wait I got a word that Regina was done and everything went fine:).

SHe slowly started waking up from surgery.. SHe was given some popsicles ( sp?). I got discharge information, what to do, when to do it, how to do it.... What to look for, ( like bleeding from surgery site, fevers, oozing... etc...). ANd then we started our drive back .

I AM JUST glad it is out now. Regina can finally take baths and start swimming. We still have to wait till it heals, but at least I do not have to worry about daily flushes, weekly dressing changes, making sure her line site is clean and not infected, dealing with Crescent Healthcare about supplies... hehe

Sunday, May 4

Ride for Kids.







Pediatric Brain tumor Foundation was established 25 years ago.

Today was 17th Los Angeles area Ride FOr kids. For us it was 3'd ride overall. 3 years ago our friend Kathy invited us to San DIego ride for Kids, and year after we did LA RIde for kids, and this year again.
IT is amazing feeling to see so many motor cyclists in one place and they are there for only on reason- TO raise money and awareness about childhood braintumor. Money they rise will go to brain tumor research. THis year LA area Riders raised over 260 000 dollars. AMAZING!!!
There was about 600 or more motor cycles riding today- again, it s really hard to describe what was going on.
Regina and Gabriel were riding on side cars and Nick and I just sat on back seats of other bikers.

THe whole ride was guarded by police officers from surrounding areas - I think there was about 40 police officers making sure we could drive through red lights without any upsies;).
Ride was very scenic- ocean views, city views, and all the other views. :) Weather was tinybit cool, but thats ok.
Before ride there were trick rides , doing some pretty awesome bike tricks- 70 year old dude doing some bike acrobatics, and other tricks. Very interesting sight to see.

Also, Dr Finlay and Epstein from CHLA were there to give thanks
Anyway, it was awesome day, and we all had great time. ( well, Regina thinks it kind of boring, since she has to sit and pose for pictures..hehe.

SO, guys, I was thinking, if you have change, send it over to our house. We are starting to do some fund raising ourselves. :) We have year and goal about 5000 dollars. We hope that by May next year we have this amount with your help my dear friends:)
Help us find cure for cancer :)


AND NOW- MOST EXITING NEWS---- REginas central broviac line will be removed tomorrow-- NO MORE SPONGE BATHS!!!! She has not been able to take baths for almost a year. IT is about time . We have to be In CHLA 6am, which means I have to start driving 5 am.Yuck. But yahoo for no more restrictions.:)

ALSO, regina is off her meds that made her act out of character. For now on, she should start getting better again:)

Thursday, May 1

Heart Attack...


Regina ran away today. Yup, she took off like there is no tomorrow.
I went to pick Gabriel up from YMCA. REgina told me that she is tired and sleepy and wants to say in car, so I LET HER.( I kNOW, I should not have, but YMCA is right there), and it only takes me 2 minutes to pick Gabe up. SO on our way back to parking lot one of the mom mentioned that Regina was on parking lot .
SO I went out to look for her ... SHE WAS NOWHERE TO BE SEEEN. I was panicking. I ran to her classroom to see if she went to see if Ms. French was still there. SHe was not there. I LOADED Gabe to car and took off as fast as I could. I knew She was walking home, because she mentioned to me before that she wants to walk home... ANd finally everything started to make sense- Her pretending that she is tired and sleepy....

SHE WAS running , she was running towards home, when she saw my car she did not stop, she kept going. Sadly I was on other side of road .... and out of nowhere came one nice female police officer. SHe saw my car, she saw girl on the other side of the road and she asked me what was going on and if Regina is my girl- I told her fast what is happening, she turned her car around , spoke to Regina and took her by hand to my car.... SHe also gave Regina speech about bad people and not to do this again. REgina apologized to me, and I could see that she was very embarrased...
At HOme she broke down and started crying and told me that I am mean mom, since I do not let her do what she wants to do....

I know SHE PROMISED never ran away again, but IF YOU SEE tiny bold girl walking on side of the ROAD, then know there is one very scared mom looking for her......