May 28th, 2004

( Photos year 2007 Celebrating Regina)

I did not update yesterday .
But 5 years ago , on May 28th, 2004 Regina had her First brain surgery. I can't believe it has been 5 years.:) 5 hardcore years of real life. Real tears, Real laughter and Real stess.
Thank you for sticking with us, supporting us, helping us, crying and laughing with us. listening to my crap and giving me crap :)

THANK YOU :)

:)

About me:)
I woke up around 4.10 am. TOOK quick shower, woke up Nick "threw" my kids into our car and went to UCI medical center where I had my vascular surgery done by Dr. John lane.

It was so funny to be patient. Usually I was the one watching after Regina, standing next to her bed, watching nurses hooking her IV's up, giving her "sleepy" medicine. This time I was THE PATIENT. AND it was great feeling. :) UCI nurses are great :)
Anyway. Hooked up my IV, got labs drawn- saw gazillion doctors nurses and other important people who all wanted to know why I was there, which leg will be fixed, what meds am I on-- AM I PREGNANT --hehe, ...
ANd finally after talking myself to death I GOT MY FIRST MEDICINE cocktail. UUHHH. That was good. For about 3 minutes later when they started wheeling my away to OR, People suddenly seemed so cute and cuddly that I just wanted to hug everybody. I felt funny.. and while Dr Lane started doing Ultrasound on my leg I PASSED OUT. whew. I WISH I stayed awake. M WELL, as I was told after vein stripping surgery and Endovenous Ablation of Varicose Veins- I WAS JOKING AROUND and laughing and having good time-- REALLY???? REALLY ??? REALLY??? I HAVE NO recollection what happened. NONE whatsoever. I remember waking up seeing lights, passing out, waking up seeing lights passing out. NOT feeling any pain. AND then finally I woke up and started crying crying like there is no tomorrow. AND I HAVE NO IDEA WHY. I have no IDEA , maybe it was something they asked inside or I was talking about .. but I just cried. OF course I stopped crying and completed discharge process and CALLED NIck to pick me up from UCI .
NOW I am home and in moderate pain . Stuck with TYlenol PM that I am refusing to take. I have to keep my leg elevated- supposed to help with pain. NOT working.

BUT I AM SO HAPPPY THAT IT"s done :) I can't wait to see the "final product" , after bruises are gone and scars have healed:). :)
(Regina flushing her line)

Regina has been bringing me water and covering me up :) She is my caretaker now ;)

:D:D:D:D

Thank you all for your encouraging us every way possible:) I don't mind listening all sorts of opinions and getting advice from all of you :) Sometimes it is helpful, sometimes more harmful than helpful :) That is why we do what we do. We follow our heart and so far our heart has given us great advice :)

Regina also spent 2 days in school last week. BOTH DAYS SHE LASTED ALL DAY :) WTG REgina :) I am so proud of her:) She is so much happier and stronger right now :)
We also started her on Steroids ( decadron ) again. She was off balance, and was sleeping a LOT LOT LOT. SInce we started she is more stady, does not nap anymore. DOWNSIDE- mood swings:) ( kind of like I am during PMS)... hehe

ANyway. On Tuesday we are going to CHLA to get VIncristine and rest of her chemo drugs. ON wednesday I have my vascular surgery ( to treat varicose veins - laser and stripping).

SO If you don't see me much-- at least bring me over some salad.... Nick promised to take good care of me for couple of days... HE BETTER deliver....

Onco. Update:)

We did see Dr. Dhall on Wednesday in CHLA. We did not check her scans, but I got a copy from hospital and when I feel like it , I will check it out myself and post a pic. for you guys :)
It's not fun being a mom to a 9 year old cancerpatient. 5 Years ago ( on 28th of may , REgina had her First brainsurgery) and we thought that that was it. NO MORE CANCER :) WOHOOOO. And we were at peace. Not really worring much. THen second surgery ... HUH, peace was taken away but we managed to find it ... third and fourth surgery just crushed all hope that was left, and I am not at peace, I am relieved that tumor is stable, but I am so done with living DAY by DAY hoping that TUMOR NEVER starts growing again. I don't want to worry about it, .. But things are different.
Dr Dhall thinks ( but is not sure) that tumors are sensitive to Chemo. And "smart" way to go is to try some more chemo... Even though Reginas body is tired of chemo, she did recover pretty nicely again. So we are giving lower dose chemo one more chance. 3 different drugs. Once IV one ( VIncristine) once a week for 3 weeks in CHLA. and 2 oral drugs . CCNU - only once, and then Procarbazine fpr 10 days. We see how she does. IF it does not affect quality of her life, then we will give one more round but little higher dose ( 15 days).
I know , we can't keep doing this forever. Some of you are getting frustrated with this, and are done with cancer crap, but this is OUR life. My desisions are based on HOW well REgina is doing. Yeah, I do complain once in a while. WHO WOULD'nt. WE all have issues , we all get pissed off once in a while and need to vent.. Sometimes I listen to your issues and stay neutral, sometimes I just don't.

Anyway. More low dose chemo. MOre Labs, MORE MRI's, MORE this n that. AND if it prooves to keep her alive and does not affect her Quality of life , and she WANTS TO FIGHT WE DO IT AS LONG AS IT TAKES ;0) capiche?

Regina went to School today and she lasted all day :) Again, her classmates and friends were very exited to see her, they greeted her with hugs and WOWOW REGINA happy yells. And more HUGS, and more REGINA yells:) She was happy. I could see it in her eyes.

We also want to thank you Third grade Teaches for a awesome surprise :) WE LOVE YOU ALL:):):):)

:D

GOOD NEWS:) MRI is stable, and even slightly better. Little more necrosis close to brain stem area... YUCK. Could explain why she is sleeping so much. :) ANyway. Stable is good. We are going to CHLA tomorrow to discuss what can we do next. IF it's stable then we got to try something? right?

:D

!!!!!MRI today( Monday) 5.30 pm in CHLA !!!!!
REgina is doing pretty good. SOme issues here and there. Her balance is little off - she can't use her scooter, and her legs are week which makes it hard for her to bike. She still favors her left hand over her right. And some days balance issues are worse than others.

And Nick is finally home. REgina is very very happy aboit it. :):)
I promise, I will update you as soon as I know MRI results.

Birthday, Mothers day and more

I love when Regina eats and does not complain that food tastes weird.
I love when REgina dances and does not loose her balance.
I love when both of my kids play together and don't argue .
I LOVE it, that she finally told me that she feels great and wants to be with Gabriel tonight . ( same room ).

IT has been good 3 days for her :)
We had great mothers day. Well at least first part of it. We spent it with Malloy Family :) Thanks Steve, Maire, Maddison and Travis :) We decided that it is ok spend little more than 9.99 for food sometimes. . WE had mothers day brunch in 21 Oceanfront. It is PRICEY. ( $65 per person and half the price for kids. BUT food there is worth it, plus location is amazing. After filling brunch we headed to Fashion Island just a little shopping and merry go round :) Around 1 PM REgina got Really tired and we had to go home. SHE took a super long nap, while Gabriel played wii and watched you tube...

On Friday night we had few friends over to celebrate my 31st. It was great night with great people. Lot of laughter:) To be honest- every year since 2004, my birthdays are not the happiest celebration for me. In May 2004 REgina was already sick and she had ALL sighs of brain tumor, but doctors ignored them. She was sick, and every year around this time all I can remember is tired and sleepy her, not eating, not being happy. ALl I can think is hospitalizations and her getting worse. I know , I know.. IT's in past, but i can't help this guilty feeling. AAAAHHHH. I wish no mom has to feel how I feel . BUT good thing is. Regina is doing good now:) AND I try to concentrate all good things, and tying hard not to be scared.. I am sorry if I have said hurful things for any of you in a moment of heat. THere are days I can manage my feelings better , but on other times, I just let everything out... srry for that.

You can check out our photos.

www.caliwitch.smugmug.com

Somebody reminded me today that I haven't updated since monday. UPS. Srry dear followers :)
Regina is doing good. Nothing new since monday. She is trying to taste new foods, and if she does not like it she spits is out. She told me since she is going to be GROWN up soon, then she has to at least act like grown up once in a while... hehe.

I have also noticed that ger right side is getting weaker.. She is not very exited about holding pen or eat with her right hand. SHe tells me that it feels like someone is crawling there all the time.. when she does her puzzles, she uses her left. When she colors she switches between right and left hand.:)
But her legs are getting stronger once again:) There are days she is not very stable, but other days she is doing great .

ALSO Yesterday she lost 3 TEETH :) 3 in a row. I thought I gonna pass out. I thought that Chemo made her gums weak, but after closer examination I FOUND 3 WHite tiny dots :):): New ones are growing :):):)

Regina is exited about mothers day. SHE wan's to make me mothers day sandwich:).. SHE is not that exited about my 05/08 birthday, since I am not really inviting any kids over. I told her that Maybe few friends will stop by and take their kids with them, so she could play for a while.. . SHe felt little better about me getting older after that :)

That is about it :)
:):) Special thanks to Gayle for helping with dinner deliveries :):):):):)

Today was a great day. REALLY good day. In every way. Sun was shining, everybody was kinda happy . BUT THE best news came from CHLA. REginas counts are good. Hemoglobin, platelets , anc, white count. ALL GOOOD:):) aaahhh. IT is amazing how paper full on numbers can make you feel... But also, looking at Regina I can tell that she is feeling better:) She smiles more, jokes around more and argues more with Gabriel...hehe.
ALso I got a great surprise from Estonia and that just put a bigger smile already into my smiling face.:) And Nick called ... It was a great day :)

RIDE FOR KIDS:)

Today was such a great day:) We look forward to this even ALL YEAR LONG. I already wait for next years event;)
WELL, I am talking about RIDE FOR KIDS:):):):) TO see all mot0cyclist come together to Raise funds for something so important to us, just brings tears to my eyes. I copy and paste from their website what this RIDE is all about and if you want to learn more HOW YOU CAN help, check out Pediatric brain tumor foundation website :) And dont' forget to donate in REgina Tans honor:)
Today's weather was perfect. Nice and sunny. Everybody was in great mood and it was nice to see some familiar faces:) IT was 4th ride for us. ( we done 1 San Diego ride, and 3 Los Angeles rides)
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The Ride for Kids® is a motorcyclist's program that is helping find the cause and cure of pediatric brain tumors. It also serves as a educational support program for patients, their families, and the medical community.

Mike and Dianne Traynor started the Ride for Kids® program in Atlanta, Ga., in 1984, when a friend's child was diagnosed with a brain tumor. After watching the tragic deaths of many children, they set out to help find the cause and cure of this childhood killer by soliciting help from their friends in the motorcycling community.

With the support of America's motorcyclists, the program began to raise awareness and funds to pay for research in the nation’s leading brain tumor research centers. The success of the first Ride for Kids® event in Atlanta led to the program's expansion to Chicago in 1989. Mike and Dianne soon decided to devote full-time attention to their advocacy and fundraising efforts, and started the Pediatric Brain Tumor Foundation (PBTF) in 1991.

The PBTF is honored to be the official charity of the Honda Rider's Club of America (HRCA), which has been the presenting sponsor of Ride for Kids® since 1991. Thanks to the significant support of American Honda Motor Company’s motorcycle division, Honda dealers and other motorcycle industry companies, the program has raised more than $40 million for pediatric brain tumor research.

This support has helped make PBTF the largest nonprofit source of funding for pediatric brain tumor research outside of the U.S. government. In addition to research grants to medical laboratories, PBTF funds started the Central Brain Tumor Registry of the U.S., a national database of disease and patient information.

Thanks to the efforts of Ride for Kids®, progress is being made in the search for the answer to this terrible affliction. Each year laboratories worldwide take steps toward new and more innovative treatments for young patients. However, until the cause is isolated the prognosis of these children will continue to cast doubt on their recovery, and for those who survive, their resulting quality of life.

But with your help, there is hope. What began in 1984 as one couple’s quest to help these children has now become the target of thousands of caring motorcyclists who work diligently to help these children by raising funds to fight this terrible disease. Together we will cure the kids!