Sunday, June 29
Great weekend.
This was one busy weekend.
Before I go ahead and tell you all about our weekend stuff, i ask you to send some healing thoughts to Reginas way. Reginas Impetigo is back ( it is healing right not and is past infectious state, but it still bothers her). And Regina has headache - today is her second day to have it. I just hope that it is due to her Avastin(anti-angiogenesis) treatment. I will call Dr Dhall tomorrow if Regina wakes up with a headache.
NOW, our weekend.
On Friday we decided to host a dinner grill party. We have not had any grown up party's for a while and it was time for it. Our dear friend Steve came over and took care of grilling. I marinated meats, but he made sure they were grilled to perfection. :) thanks Stev-O. Last patch of people left around 11.30. IT was sooo much fun:) About 25 grown ups and their kids showed up:) Thank you for coming.
On saturday we went to celebrate our friend Jordans second birthday. Again, lot of food, great people, and whole bunch of grazy kids. Regina and Gabriel are done with bounce houses, so I took them home hour after party ( we live couple of houses up from them), Nick was home OF COURSE. Myself I went back there and enjoyed some fun sweet ( yuck) coctails.
THEN, on Sunday( today) we went to bowling party , that We Can( Bediatric Brain tumor Network) organized
http://www.wecan.cc/
Bowling party was in Santa Monica, It is about 65 miles from us ( about 80 km). But regardless of high gas prices, we did not mind the drive. We knew that this event will be fun- And it was. Thank you Kathy and Cris for organizing this event. We did 2 hours of bowling and we think we are done.
There are couple of really exiting events coming up, but I will write and post pics about them when we attend them :) I hope you all are having a great summer :)
Tuesday, June 24
New Hair :)
Thanks to Robert Ferrari , Regina has a new beautiful set of brown real hair. She has been asking about her new NO ITCH hair for since we went to see Robert couple of months ago, and when I told her that her wig is in, she was She looks adorable. Honestly, she looks too adorable. She looks just like her American Girl Doll now:) So cute :)
I know, it looks like whole lot of hair, BUT we have a reason to keep her hair that long. Since it is a wig, hair will not grow ( duh). SO, if she feels like she wants shorter hair next time, we can cut it into different style.
So guys, if you need a great hight quality wig, or hairpiece ( all of you who have bold spots) contact Mr. Ferrari and he will hook you up with bestestestest wigs or hair pieces...
Ultimate Image Studio
1400 Bristol St. N. #260
Newport Beach , California 92660
Now Before and after pictures
Sunday, June 22
HAPPY BIRTHAY TO GABRIEL!!!
On June 22nd, 2001 I gave birth to my second child- Gabriel Austin Tan. Labor was short sweet and easy ;)lol
Today we celebrated Gabriels seventh birthday . Couple of months ago we got this letter from some new place that had opened up close to our home, and I decided to visit them , to check them out. Place is called http://www.wowzville.com/ the moment we stepped into that place, We knew that Gabriels birthday party will me in there. They have 3 interactive theme rooms. Gabriels favorite room was NASCAR RACING room. IT was so much fun for kids.1 and 1/2 hours of uninterrupted interactive racing I was surprised how well kids behaved. They loved every minute of it.
Gabriel wants to say HUGE thank you to all of you for Remembering him on his birthday. He is really shy boy, but I could see sparkle in his eye .
Also- today is THE day- June 22nd, 2007 - Regina had her second brain surgery:):):):)
And one more thing- OUR number one friends ( yes, we are still on middle school), invited us ( regina and I ) yesterday to see High School Musical on stage. Oh, it was cool play. I laughed out loud couple of times. Fun times :):)( Yes , we had very busy saturday- First beach party and then High school musical.)
Sunshine Kids annual Beach Party
It was fun saturday afternoon. Lot of Sunshine kids, great weather, awesome food and well behaved kids.( mostly). Thank you Sunshine kids Amy and Brooks and all the other who made it happen.
G.W. Bailey
Executive Director, The Sunshine Kids Foundation( you may know him as Capt. Harris in the POLICE ACADEMY film series) and Kyras daughter Sosie Bacon. Regina and her made sand drop castles and played in ocean together.
Kyra Sedqwick and her daughter also attended sunshine kids Beach party. She looks stunning in person. :)
Wednesday, June 18
What a difference year makes...
Today was such a glorious day. Do you know what made me happy today? People remembering what happened last year. Thanks god for HUGE sunglasses , but couple of times I did tear up.. I am just so happy that Regina is still in peoples thoughts and prayers. You have no idea how many people came up to us today and yesterday and congratulated us , and just reminded us what a difference year makes. Last year this time things were quite different. We were in ER , last day of school. Me sitting on the floor crying my eyes out just not knowing what that massive mass on her head was. Doctor trying to keep straight face while giving me the worst possible news, avoiding looking into my eyes while doing me... , REgina being transported from Mission Hospital to CHOC hospital by paramedics... Her head lever had to be right and I was not allowed to take her there with my own car. Moments before her surgery... not knowing if she could survive it... Crying the whole 4 hours while she was on surgery, crying after we were told there nothing they can do. Leaving hospital with not knowing what going to happen tomorrow...
I am just so thankful to all of our friends and strangers who have reached out to help us during this past year. All cards, emails, phone calls, babysitters.... FOOD, gifts, floweres, hugs, it all has been amazing. I really am thankful... I am not that emotional " American" way, but I am happy that I live in this country full of options and hope.:)
TOday was last day of school. Kids got report cards. Gabriels report card was excellent. He is my genius . REginas Report card was ok. She missed lot of school and she is slower than most of kids at her age, but she did ok. I am proud of her:) MOnday she will start summer school:)
Also I am so happy that I met one of our good frieds after school was out. SHe invited us to her Annual pool party. Oh gosh, it was so much fun. Seriously. TOday was glorious day and perfect pool party day. Kids had lot of fun, I had lot of fun, and everybody else was having splendid time. Thanks for inviting us:).... pool was filled with energetic kids, poolside with "happy" moms... and couple of dads. ... summer can begin now.....:)
I am still taking my happy pills... Celexa every other day. LOVE IT!!!
Tuesday, June 17
Hudson Wyss passed away on Monday June 16th, at age of 3.
http://www.hudsonandabella.org/updates.php
http://www.hudsonandabella.org/updates.php
I give you this one thought to keep -
I am with you still - I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sunlight on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush,
I am the swift, uplifting rush
of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not think of me as gone -
I am with you still - in each new dawn
~~ Author Unknown ~~
I am with you still - I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sunlight on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush,
I am the swift, uplifting rush
of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not think of me as gone -
I am with you still - in each new dawn
~~ Author Unknown ~~
Sunday, June 15
My boy is little sick.
Send some of your magic healing thoughts to Gabriels way. My poor boy is sick .
This morning he complained a little headache and yesterday he had some weird- our of character moments. But since he was still active and happy I did not think much of it. Today we went to swimming and at the pool he started feeling cold and he almost never feels cold. At home he went to sleep 6 PM, right after his dinner. And then I woke him up aroung 8 PM to check his temperature, and it was 102.0.... And then he threw up ..... and his fever went down to 100..... Now he is sleeping again. He has not been sick for a very , very long time. And when he gets sick- HE GEts SICK big time.... I just hope that he recovers by Sunday. he has to. It's his seventh Birthday.!!!
Thursday, June 12
Fight is never over. And it is a tough battle to win. During chemotherapy kids are fighting hard to stay alive. They are fighting for their liver to survive cancer. We parents stay awake for nights at a time , monitoring closely those chemo side effects. Taking our children to restrooms, wiping their behinds, feeding them food that will not stay in them for long, feeding medications one after another and wondering , when will it finally end.....
Our job is to protect our little ones . But how do you protect someone from something so horrid like C A N C E R ? I just want to point fingers and say IT did it, IT made regina have caner... IT Is ITS foult... But what is this IT??? I want to know.
Now that this IT is part of our lives, cancer is not only our enemy , but it is now our most hated family member, and we are fighting hard to make it disappear make it not come back.
I almost feel that our friends should be asking- So how's PNET doing? Is it still hanging around? Is it creating a new family somewhere In Reginas head?? Or is it packing it's bags and leaving.... Surreal life AS it is
Avastin Treatment went great. Regina had no immediate side effects
""""PRAYER/GOOD THOUGHT Requests.
Our friend Hudson is not doing very well. He has been on hospice for 3 months now, and his condition is getting worse by day.++++
""" Our Friend Grayson ( ATRT brain tumor). had few rough days in hospital and is now resting at home. But he is very sick, and he has very aggressive cancer that does not want to give up.:(
Sunday, June 8
We are doing great:)
7 MORE DAYS OF SCHOOL AND WOHOOOOO!!!!! Wohoo to Gabriel, but Regina has one more month of hardcore summer school coming up. . school starts 8 am and is over by 11 Am. I also signed her up for some etiquette classes. She does have great manners, but this 2 week course sounds like lot of fun and it is something she would enjoy and they end this course in Ritz Carlton with Tea party :)
We Did some summer cleaning today. We threw away 2 LARGE trash cans of broken toys that make no sense and books that are missing few pages and cars that are missing remote controls etc. IT FEELS great to LET GO. I feel guilty doing it, because all I can see is DOLLAR SIGNS in trash cans, but I have to throw them away. And finally my kids have come to senses also and they really do not mind me getting rid of stuff that they once loved very much.... For few minutes...
Also, in 2 weeks my baby boy turns 7 years old. Luckily he changed his mind few months ago and does not want to have his birthday in scooters Jungle. I am so happy about it. He has been very exited about turning seven. He reminds me every day WHAT kind of birthday cake it has to be, checks if his friends have RSVP'id ( most of them have not YET). He really wants to have WII for his Birthday, but I have been on Wii hunting past 3 weeks,( EVERY DAY), and wherever I go WII's are sold out. I asked him if he will be very upset if we can't find him WII. He told me He can wait LITTLE BIT Longer ( until christmas ). BUt I have to get him at least 5 WEBKINZ. hehe. He is crazy about webkins and taking care of them. He puts them to bed, feeds them, goes to doctor with them... AT least it is not some DS came ... I actually play webkinz myself ( SHHH, ))
OK. Hope you all are doing great :)
Wednesday, June 4
Ohh
Week 2 on chemo. Regina does pretty well.. 4 more weeks, then she gets 2 week break from Chemo.
We went to see Dr Dhall today. And had Reginas labs drawn. That was lot of drama. Since Regina does not have central line anymore, she can't do labdraws in our loved outpatient clinic. First time ever we were sent downstairs to Blood Draw Clinic. UUUHH.. Not good, not good at all. First of all, person who was taking Reginas blood was just strange. First thing out of her mouth came after she saw REginas arms was- OH, GIRL, YOU ARE DIFFICULT. She looked directly REgina in the eye when she said it. And then she lied to her. I am going to do one poke only ( with her strong middle eastern accent) , that one poke turned into 2 LOOOng and painful pokes. Regina asked after poke if they have stickers or toys ( usually they give kids tiny toys or stickers if they have more than one poke). Her answer was. No toys, no stickers. You are a big girl.... I was littlebit upset at that point. I am so used to REgina being spoiled in CHLA, that that just hurt my feelings....
Anyway. Next week we start new therapy that we have to keep doing every 2 weeks. We are not sure what kind of side effects Regina will have, but if they are to severe of course we have to stop. But we are hoping that NO side effects.
Tuesday, June 3
REgina on CHLA website.:)
http://www.childrenshospitalla.org/site/apps/nlnet/content2.aspx?c=ipINKTOAJsG&b=3539111&ct=5433341
http://www.chla.org
If you open CHLA website, then time to time her cute face will be among other children, sometimes you have to refresh your computer couple of times before you get to her. :)
http://www.chla.org
If you open CHLA website, then time to time her cute face will be among other children, sometimes you have to refresh your computer couple of times before you get to her. :)
Monday, June 2
/.....
Sunday, June 1
Celebrate Life with Hope
This was an amazing fun filled celebration. We met our friends we haven't seen for a while, ate great food and won some good prices. It was HUGE event... I think at least 2000 people ( if not more), very stressful for me , but I had to do it for my kids. They had fun, and I was the one who was running around headless, carrying their stuff they got, and just waiting while they were doing their activities. But I must admit. It was amazing feeling to be part of this celebration. :) I am really tired right now, because after this event we went to dinner to our friends house ( YUMMMMM!!!!) and now I kind of feel like hugging my pillow :)...
My kids are upsairs opening prizer they got today.... Also, we got to meet couple of cool celebrities... Like that gardener guy from Desperate house wifes, Lava girl, some soap stars ( handsome ones, and more.....
We met our Sunshine Kids friends Amy and Brooke , our Hope Resource center friends, Nurses from CHLA DRESSED IN REAL CLOTHES ;), , Our fave nurse WHO is MOVING, doctors, lot of wendors, and more. :) OK, ok, I am going now... Sleeeeeppppphhhh ;)
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