Wednesday, june 27th, 2007 . Update.

Our Family 5 minutes before surgery, june 22nd, Also GABRIELs 6th birthday.


(june 24th, 2007)
(Regina, Tuesday, june 26, 2007)



Pathology report confirmed- Recurrent PNET. I have been been reading records today, and more I read more it hits me. There is really nothing much doctors can do and all we do is hope for a miracle. I also have been staring reginas brain scans and i am still in disbelief. Her left frontal lobe looks completely messed up, picture is devastating, but REGINA acts and looks very normal and aware what is going on. day after her surgery she was ready to give up. We saw it in her eyes. She was just done fighting. She was limp and tired and not ready to fight. But today she is completely opposite. She woke up smiling, happy, singing silly songs, making up songs, laughing , making stupid jokes and laughing out loud. She also told Nick that she does not want to become angel yet. She wants to grow up to be big girl ...... Is it possible??

nick has been working hard all day today gathering information about different kinds of medications and treatment plans.

There is NO cure for her right now, but there is possibility to make her live longer few months. Oncologists believe that since her type of tumor is very aggressive , fast growing, there is possibility that it may also respond fast to chemo. We are considering some kind of chemo, but nothing very toxic. I do not want her to suffer as much she did during St Jude chemo. So hopefully we can start with something on monday. Again guys. There is not much doctors tell us. They are also refusing to talk about " numbers" , survival rates. And emphasize telling us- THERE IS POSSIBILTY to make her live 4-5 months longer.
We were told that without treatment she would not live to see September. But would it not be cool if she could live to be at least 8 years old??


ALSO!!!! THANK YOU TO YOU ALL WHO HAVE EMAILED ME, CALLED US, SENT CARDS, GIFTS TO REGINA, WELL WISHES, ENCOURAGING WORDS, BROUGHT DINNER, SENT PRINCESS TO REGINAS ROOM, EMAILED US INFORMATION ABOUT ALTERNATIVE MEDS, T H A N K Y O U !!!!!!! Your support means lot to us, and know, even thought I do not respond right away, I appreciate everything you do . We try to spend as much time together as family and I may not answer your emails and calls in timely matter.

AND our house is always open to you guys. If you feel like coming over to see us, do not think twice. Only rule will be- you have to self serve this time ;) If I feel like I may make something nice to you , but do not be hopeful...

ALSO. May I ask one huge favor from you :) I may sound rude and selfish, and maybe i really am... But I have to say it. Over these past few days Regina has received whole bunch of cute and cuddly toys. I swear , they are CUTEST TOYS EVER... But I have very hard time with this. All I could think about is- what happens to these toys after she passes away??? I am one of those persons that can not throw things away,... everything will be reminding her positive way, but how much is to much??? You know what I mean... I am not STOPPING you for doing this, and I know that every time she receives something it brings a smile to her face. Oh, she is so material...lol But oh well, it is ALL about her right now, so... I just have to find a way to deal with it...

So guys... Far and close, tall and short... stay tuned. It is very hard time for us, every morning we wake up and she is here with us, makes us cry happy tears, every night we fall asleep, we cry because we just celebrate another successful day. May there be another 50 years full of successful mornings and evenings....

PRAY FOR REGINA!!!!

Regina reading. Few hours before her surgery...


My dear friends. My eyes are filled with tears, and my heart is bleeding.
Our beautiful daughter Reginas Cancer is back, and this time it is worse than ever. I took her to ER on june 21st. On june 22nd she had surgery to remove one Of her tumor. Since her brain is covered with 40 something tumors right now, there is nothing much doctors can do. Please hope for miracle and pray for her . We all need prayers right now. doctors and nurses are doing all their best they can, but sadly , there is nothing much they can do right now.
Regina is on steroids, seizure meds, painkillers etc. But all through this she keeps smiling. I have not heard a single complain from her. She remains strong, but we can see that she is ready to give up. She is tired of fighting. WE LOVE HER SO MUCH. IT IS UNREAL HOW UNFAIR IT IS. NO CHILD DESERVES THIS . NO PARENT SHOULD FEEL PAIN WE FEEL RIGHT NOW.

Sometimes in Next week, we will take her home and make her feel as comfy as possible. 2 months is not enought. I do not want her to leave,.. she is our baby, she is our Star. SHE IS OUR PRINCESS FOREVER!!!!!

WE DO NOT WANT TO GIVE UP YET. THERE IS ALWAYS HOPE!!!

PLEASE PRAY FOR HER.... IF YOU WANT TO SEND HER CARD WITH ENCOURAGING WORDS PLEASE DO SO. SHE LOVES CARDS1

OUR ADDRESS IS
REGINA TAN
27715 MANOR HILL RD
LAGUNA NIGUEL
CA 92677

YOU CAN ALSO REACH US BY CALLING (949)916 5098 OR MY CELL (949)290 6958
I can't promise I'll return your calls, but know you all thinking about us and praying and sending good thoughts to her way , helps a lot.

My kids!!!

Regina and her Teacher Mrs Miller:)

PICTURES!!!! Aren't they gorgeous ???
It is unbelievable to me that school year is almost over. What happened??? gabriel will be done with Kindergarten and Regina will be done with First grade.
I enrolled Gabriel is K+ ( YMCA program) , where she spent 3 hours every day, until Reginas school was done. They had very cute party today. Our favorite k+ teacher Emily celebrated her birthday ( BTW, Today was my brothers 22nd bday ) and There was little K+ graduation party for kindergartners. It was really sweet :)

I am glad that first grade is over for Regina, but I am scared for second grade. Homework time is very frustrating with Regina, and I heard that second grade has A LOT of homework, .. not sure how we are going do deal with those issues.....
( We are goofy "kids")
But here are few pics...

:)

It started suddenly, it ended suddenly. She woke up today completely different person- DEMANDING FOR FOOD. Her energy levels are back to normal. She has NOT vomited today, or acted tired.
Gabriel is doing fine. Just calling Regina BIG BABY. And of course that will make Regina cry. And she will chase gabriel and beat his "ass", and then Gabriel runs after regina and Pulls her hair- ( or what's left of it), Regina runs around screaming- GABRIEL IS kILLING mE, , Me looking surprised and confused same time because I can't figure out- eater "spank" them, or laugh at them... But I just decided to tune out and listen to my iPod..

So, sorry guys for making you worried. AND THANK YOU FOR YOUR SUPPORT. It was hellova 2 days....

Very stressful day.

Past few days Regina has been feeling down. She did mention me couple of days ago that she had a headache, but I thought she told me that because she did not want to school, since there are 2 girls that make fun of her sometimes ( so she tells me). she has lied to me before about her headaches, so this time it was hard for me to believe.

Then , last night around 2.15 AM. I hear this sad voice- "Mommy, my head is feeling really full. I really want to throw up... And she did..... And she has vomited constantly up to now. Every 45 minutes or so. :( she can't keep anything down. NOTHING!!!! Now she is sleeping .

I just hope that it is passing thing and she feels good tomorrow. Just keep your fingers crossed that she ate something bad....

Just intersting fact.

I was searching for jobs for summer, and while browsing McDonalds website ( yes, I am considering McDonalds ;) I found this.....

In 1995, the $1 million Monopoly winner anonymously mailed the winning game piece to St. Jude Children’s Research Hospital in Memphis, Tennessee. McDonald's overcame rules prohibiting transfer of game pieces by donating $1 million to St. Jude.


And tomorrow is June 4th, 2007. Another important date for us... I know Imentioned it last year , around same time.. But I do it again... June 4th was day full of anxiety for us. We were told that Reginas brain tumor was malignant, but good thing was that it is not the worst type of tumor.... ( yeah, like that was supposed to calm us down or something ). So there you go... I am flooded with june 4th, 2004 memories again. Not a good feeling.
have you seen those movies when something bad is told to a person, and then all that person hears is those "bad words". She hears nothing else, background sounds, are all blurr, other things that people are telling are blurrr.... just one blurr, and then that persong gets back to reality and asks-- WHAT, did you say..... huh,,, -- that is how I felt when I was told what was going on... I think I am still walking around in a blurr, sometimes more, sometimes less. I still can not believe that something like that could have happened to my girl

My Beautiful Regina.:)
Reminder- May 28th, 2004, My beautiful Regina underwent Brain Surgery. June 4th, 2004, We were told her Brain tumor was Malignant .(PNET)
It is May 26th, 2007. Regina is Happy and Healthy 7 1/2 year old.
Thank You St Jude
Thank you Friends.
Thank you all who have been there for us when we needed you.

Our Sunday started 8 am, I made breakfast, exercised, made kids clean up their rooms, and then around 12 we started driving to San Diego. J Drive was smooth, traffic was excellent.. We arrived at Paradise Point Spa Resort around 1.30. 30 min. before we supposed to show up there.

When We arrived , I was in awe. UNBELIVABLE. ROAD ended where Resort ended. AMAZING. That place was also voted one of the best family vacation destinations J Very peaceful willage.

Then we started look for Gymboree corporate event spot, because our St Jude coordinator was supposed to meet us in Paradise Ball room. J And give us update how things are going, and when is our turn to talk. ( share Regians Story).

I HAD NO IDEA. but we had to talk to 300 Gymboree bosses. AND for my surprise I was not nervous. I WAS, before I stepped to stage, but when I was in stage, and opened my mouth, Everythig just fell into place and I spoke my mind. I also saw quite few people tearing up.

Then around 6 pm we left BEAUTIFUL paradise point resort and started driving home I Left the event with really happy heart because I knew Reginas story will hels Raise more funds for St Jude :) Thanks you St Jude for giving this opportunity to give something back. :)

Kathy... I thought about visiting you, but it was 6PM when we finally got to leave, and kids have school tomorrow...

Few proud moments :0)

FINALLY- my handsome boy learned to bike . TRAINING WHEELS ARE OFF and my Gabriel has crashed into every single front yard in our neighborhood. Soon neighbors will be knocking on my door and asking me to fix their landscapes :D lol He is such a dare devil. And makes me smile. His legs have "black"spots all over from falling, but he is so determined and does not mind getting hurt. I swear, he is something else. BUT, he will cry, when I refuse to give him ice cream or take away his fave toy because he missbehaved... hah

Today in our local YMCA was family fit night. REGINA decided to do something she never tried before - She did some rock wall climbing... WOHOOOO!!!!! We also learned few new dance moves from our Favorite Y director Brian.. he is quite a dancer. :)


ALSO. I would like to take to wish HAPPY BIRTHDAY to all of you whose birthday is in MAY. PALJU ONNE SYNNIPAEVAKS KOIKIDELE MAI SYNNIPAEVA LASTELE :)

Ride for Kids

Today, May 6th,Regina, Nick, Gabriel and I headed to Torrance area where we attended Ride For kids event.
http://www.pbtfus.org/rideforkids/calendar/2007/losangeles07.html

It was amazing experience. Last year, Kathy Invited us to San Diego Area Ride for Kids event.. And she got me hooked. It is unbelievable event, and funds raised go towards Pediatric brain tumor research , and also brain tumor patients who reach college age, will be benefiting from money raised. J

Tide was BEAUTIFUL. Views amazing, weather HOT. And bikers were ON THE ROLL!!! It was huge event and money raised – over 200 000 dollars. WOW. WOW WOW..

Regina had lots of fun, but as happened during San diego ride, it also happened now- SHE and GABRIEL FELL asleep, and missed all the beauty surrounding them…. J
I also post coupe of pics for you J

And here is pediatri

Happy Birthday Madison

Tere kallikesed J

Today was such a fun day J I want to thank you Maire for inviting us to her humble home to celebrate her Daughters Birthday. HAPPY BIRTHDAY MADISONJ
Malloy family house is always filled with positive energy and FOOD. LOTS OF FOOD. Maire has lots to be thankful for. Her husband is kitchen remodel dude( American, who can actually fix things. OMG --- AND, and he can cook, ( sorry Maire, You are great cook, but I will not place you before Steve….

Grilled chicken, beef, burgers, hot dogs,,,, cheese dips, ( Maire made the bestestest artichoke tip I have had in a long time, AND her pasta salad was also very tasty. It was so nice to just sit back and relax,, ( which I did not do , because I still had to keep an eye on kids…. ;) But oh my, at least it was not me who had the clean house in the end. ;)

So MADDY, one more time--- HAPPY BIRTHDAY…

LEHMAKOMM.

I am laughing out loud right now. Regina and Gabriel have been asking from me forever to Call Estonia and get some Estonian Cow candy ( YUMMMMM). So today I told them, ok guys. Write grandma letter and let her know that you need some cow candy.
REgina did.

While I was on phone Regina asked me something,but I was not really listening... What she was asking was- HOW DO YOU WRITE GRANDMA...
But since I was on Phone I thought she asked - HOW DO you write COW CANDY in ESTONIAN... WHich is- LEHMAKOMM.. so this letter is from Regina and Gabriel TO: LEHMAKOMM....
sorry grandma.... lol

st Jude

Memphis as it is..
OR, should I say as It was..
Our trip from OC started out fine.. I printed tickets out in advance, so I did not have to waste time figuring out how those self serving “ ticket” printers are supposed to work…

I LOVE continental. Nice service, bigger seats, more space… LOVE it..
BUT.. our paradise ended there… During take off Regina started crying. At first I thought Gabriel did something to piss her off, But then I started asking questions and I found out that Her HEAD hurts. IT HURTS A LOT, that is what Regina told me. I guess pressure in the cabin got more intense and she started screaming.. I was freaking out, crying with her, not sure what to do. … Finally she calmed down… UNTIL it was time to land…. She started complaining ear pain… and I knew- she has an ear infection ..
So in Houston drama repeated and she was pretty miserable… LLL

On Monday we had Endocrine clinic appointment. I WAS Pissed. I must say. I saw schedule and only thing it had on was ENDOCRINE FOLLOW UP . WHICH means , I spent 550 dollars on Gabe , just to go there to get an YES< Regina grew littlebit… ( she did wohooo)
Now DRAMA… I gave it to them in full force, I asked what is deal about scheduling, blah blah blah blah, me crying and screaming, and HER , getting frustrated with me and telling me- I should discuss my issues with social worker. Ha Yeah, I probably should, I also told them, that WHY I could not see endocrinologist here in OC. AND you know what was her response- YES, YOU COULD. And I was really confused then… and I gave them even more drama.. Because I was told that It is not possible, you can’t , we have to see you here blah blah blah. Anyway, very confusing… But we got everything finally straightened out and now I am starting to look for an endocrinologist here incase we will have “ issues” going there…
(BTW) , Even though we “graduate” yearly appointments only, we have to see endocrinologist there in every 6 months, and if they feel like testing us between, they may fly us over there whenever they feel like ;) .. Not happy about that… ( But, please tell me when I am happy??? )

NOW, back to that follow up thing. I TOLD THEM, that’s all I am here for, FOLLOW up, no labs, no bone age xray???? HUH, You better do all those things because I feel ripped off… I could get YES, REGINA HAS GROWN a LITTLE from her doc… So she disappeared for few seconds and was back and told me- I GOT YOU labs in hospital 9.15, and BONE age xray 9.45. ( sarcastic smile, you know what I am thinking about, I WAS RIGHT).
And we had to see E clinic, because REGINA does have ear infection and I wanted to get some meds before we take our flight back.. She got antibiotics and ear drops, and Tylenol for pain ( I am really happy about it, because all that would have cost m around 70 dollars ( my insurance prescription plan sucks), but at least I got that without any cost ( thank you all of you who are donating to St Jude, JJJ )/

Our next trip to St jude will be around 10th of JULY. LOOOOONG trip this time.
I hope your Easter was fun…

Happy Easter from Regina and Gabriel.

Wishing you peacful Easter ;)

Regina is Recovering from eye infection (s), that started with a bad cold. Yes, she gets sick every time before we go to St Jude. Yep you got it, we are leaving this Sunday ( early morning)… and have only Endocrine appointment on Monday and then we will fly back and enjoy rest of Spring thing.....

:)

GO SEE MEET THE ROBINSONS because WE JUST DID.
You will not regret. One of the best movies out there. And it is on 3D> Very vool :)

Jog-A-Thon.

Regina and Gabriel having fun at jogathon.

MENYY

Pictures

FOUND!!!!!

Horray... Today I found Reginas airpiece. It was kind of accidental finding.. During music lass kids have nametags on, and When Regina took her name tag off, her earpiece got stuck and came off. So today when I was handing all the kids their nametags- THERE it was, screaming for attention- REGINAS AIRPIECE , HOLDING onto yarn with that only curve it had. :) I shred couple of happy tears, because i was extremely happy and relieved that it was found. AND I apologise to all of you who I secretly blamed... ( I FEEL horrible )>:)

AND we are flying to memphis on 8th ( sunday, easter I am guessing) and we fly back on monday. We also have to take Gabriel with us and he will cost us 580 dollars- you better pay back when you grow older and find a job...lol But since it is spring brake , we do not mind having one hectic day long half family vacation. hihi.

Don't read if you are not ready for major anger....

I am little upset today L
As some of you know, Regina is wearing FM hearing aid in school now. ( teacher speaks to microphone, regina has ear piece in her ear, and Regina hears what teacher is actually saying. Well, today hug UUPSI happened…. While in music class Reginas ear piece fell out and DISSAPEARED. It is just unbelievable to me to hear that no one could find it. I am 100% sure that one of those kids took it. I know it is not right to blame others, but I know those kids and there are 2-3 kids who are JELOUS of what is going on. And I think that they should have strip searched all the kids. ( I have been in first grade, ad I REMEMBER we had few “good” thieves in there who smiled at teachers and lied to their faces while hiding stolen lunch money….


I just hope that teachers find Reginas ear piece…. I feel little guilty for her loosing it. I should have thought her better to check in every few seconds that if it is still in her ear L It costs her school a lot of money and they did everything to get that ear piece. L


And now about something else. About St Jude. I am pissed , truly am. I hate dealing with endocrine clinic. WAwA WAWAEA. They suck. We have to go ther in april. Well, we had to be there on 15th of February ( I had no Idea) I thought I cancelled our appointments, at least that is what Valerie told me. SO I get a call from Endo clinic- WHERE THE FUCK are you guys. You supposed to be here RIGHT NOW, we NEED TO GET YOU IN ASAP. I had my HUH moment? What you mean as soon as possible. Is Regina is some kind of danger…????

Well, seems like Reginas BONES have to be measured at first in ever 3 months and if it is little longer , I guess her bones just don’t measure right ( just kidding, some dark humor you know). After few phone calls with e clinic and endo clinic ( WHO btw, told it CANT wait, and E clinic told us IT CAN WAIT), I just gave up and told them FCUK YOU. We’ll go there in april. You morons. I really was pissed. I have life, regina has life, Gabriel has life, and now we have to waste 3 days for that one crappy appointment. L Not happy. Not happy at all… I am sure they will tell me – Reginas BONES measure 6 ½ years, and her growth hormone has to be increased. ( Then I tell them, if you are going to pay 300 dollars per months for it, then do so. HUH.) I am sick and tired of insurance comp. who is just raising prices out of the blue with one exp. It’s new year and new prices, it’s new day and new prices… etc..


OK. Now on a happier note. We all are doing great. Regina learns to play chess. I enrolled both of my kids in music to grow on lessons and abrakadoodle art classes ( I CAN not stand competitive sports, or any sports on that matter, and thanks gawd my kids are not into “real “ sports. They both love dancing and singing and acting silly )

Boohooo

Winter sucks... Winter S U C K S>.. I love Ca winter ( Just Like Kathy) , but my kids seem not to take it that well... Regia has Ear infection - again.. She did not have ear infections for over 4 years and now they are back... right before her diagnosis time... She aso is coughing er lungs out. I took her to see her doc and sure enough she has few things.... Now she is n antibiotics...

Gabriel- Cough, strep throat(sp), low grade fever, moodyness, total mommas boy- OMG, what did I do to deserve this....lol

Myself- my ears bother me 3'd month in a row... No cure so far... Nasanex is not working, musinex is not working, nothing is working. I still feel bubbles popping in my ear, and I have b alance problems. I swear, I am allergic to OC. I need to move back to new jearsey.... And My kids are also.... hihi..

But other than that, they both are doing great. :) Regina loves school and so does Gabriel, they just have hard time giving me same kind of love....lol