Wednesday, July 29

Asking for good thoughts, prayers, vibes.


Oh guys, I wish I have some good news for you. Actually, right now I have no Idea what kind of news I have. Not good, not bad, not stable..
Sadly, REgina is not doing that well. Her physical condition has worsened within past few days. She is not able to take even 2 steps without any help. She started tilting her head to the right, and oh,.. and she started drooling. She is also taking her 3-4 hour naps during day and seems like her speech is harder to understand also.
I emailed Dr. Dhall and let him know what is going on. We are starting to give Regina MORE steroids doubling up what she was taking before ( now 2 MG per day). Also Dr. Dhall called Radiology dept. and Regina will have an MRI sometimes next week. I don't know when or what time, but I will let you know when I find out.
Right now I am little scared. Could be many things, but could be gamma knife side effects and if that is it, then we have to do everything we can to manage those side effects.

Other than that- Regina is still eating a lot, drinking tons of milk, watching tv and plays LOT OF COMPUTER:) I got her Hannah montana 3 and high school musical 3 cds. She loves music. Her new favorites are Katy Perry, Pink, Taylor Swift, and 3OH!3.

She smiles a lot and gives us hugs. The other day in CHOC she surprised me . Her Nurse asked what are Reginas plans for a day, and Regina told her that SHE IS GOING TO GIVE PEOPLE HUGS:) ANd she did give few hugs:) SHe never said anything like that before. . Sadly that nurse will move to ATLANTA ( yes , to the place where those "entertaining" Housewives are from ).
Ok. So please, send your best thoughts , vibes, prayers to REginas way :)

Saturday, July 25

:D





i
I have been reminded by few of you that I have not uploaded my beautiful blog. I do it now. Better late than never.

Nick and Gabriel are back from CHina and Regina is really happy that they are home :) Missed my guys :)

Reginas latest MRI showed no signs of tumor growth. BUT.. BUT BUT BUT> Her ride side is really weak. She can't walk without support at all. She was on steroids but they did nothing for her. All she did was eat and eat and eat. . We are starting Physical therapy on 30th of july to regain some strength and make her right leg and hand work.:)

She is doing lot of coloring, watching lots and lots of TV, and plays webkinz. SHE also eats one can of PRINGLES sour cream and onion potato chips per day ( because of steroids), so guys, if you wanna make her happy, always take pringles chips with you when you come over.
another her fave food is fried potatoes .NOT french fries, more like hash brown style cooked withbacon and with little oil only.

We are still going to choc 3 times a week for labs mostly. Sadly REginas counts have not recovered yet, and we have not been able to start chemo. Sad. :(. We were supposed to start 2 weeks ago, but platelets are not stable enough to do so. So we check her platelets and if in 2 weeks they are still not 75 000 ON THEIR OWN, then we have to think twice before starting chemo. Not happy about it. Dr.'s think that reginas tumors are chemo sensitive and prevent tumors from growing, so if we stop chemo.. who knows what might happen . Hope that nothing happens and they just stay stable for a very very very very long time :).;
Also, Regina has double broviac line in. We were talking to Dr. Dhall, and if REginas counts remain stable and platelets are high enough, we will remove it, and place port, which is not outerior line. In this case REgina could swim ( good for her physical Therapy), take long baths and does not have to worry about 2 hanging "hoses" on her chest:).

That is about it.. Gabriel stars Crown Valley YMCA in august, so at least he has something to do during daytime.

Once again, I want to thank you all of you for being so patient with us.

Di

Wednesday, July 15


I hope you all are having a great summer so far :) Regina and I are doing alright. No major drama going on. Regina is feeling great and eating lot.
Doing lot of coloring and word searches with her left hand. :)

We spoke to Dr. Dhall last week. He believes that Reginas tumors are chemo sensitive and to keep them from growing we have to do chemo. We are due another round RIGHT NOW, but reginas blood counts have still not recovered. Platelets are issue this time. She had 6 transfusions since June 12th. When her platelets stay to stable 80 000 or more, then we can start chemo.
This last round was LOWEST DOSE OF CHEMO ever, but it takes forever for her body to recover. Her quality of life is not affected by it. She feels energetic, happy, talkative :)

NOW.. BRRRRR. Her Right side is still not doing good. Most likely it is because of her tumors close to brain stem area. We hope to start physical therapy soon because I see how hard REgina struggles to take steps . She stumbles a lot with her right leg. RIGH LEG IS VERY VERY WEAK. BUT she does not complain about it. SHE just deals with it.
Me on other hand- AHHH I COMPLAIN ALL THE TIME. I am just tired tired tired of going to hospitals , appointments, giving her medications . I LOVE taking care of her, but it is hard.
I want Regina to have playdates and hang with friends .. .BUT I don't trust to leave her with other kids who are more active . She may fall , bump her head, have a seizure, .. she may have gazillion things and if something happens I will feel quilty for not being there for her..
I also can't take her to beach because she just does'nt want to go. PARK- 5 minutes of swinging and then she wants to go home. SHopping-- visit all kids stores and again SHE WANTS TO GO HOME... WAHAHAAAAA.

Anyway. SHE IS DOING GOOD concidering her situation:)

Monday, July 6

GREAT NEWS:)



m
Reginas MRI showed no progression of disease:) STABLE:)
YEAH :):)

NOW we have to figure out how to deal with all the surgery, radiation , gamma knife side effects.
We are going to CHLA On wednesday to See Dr Dhall, and also, REgina has audiology appointment . SHE needs some sort of hearing aids for sure.

SHe is eating great, feels great and looks great for a change :) IF you ask HOW I DO IT?? I don't know how I do it. I just do all I can , my friends are doing what is in their power and doctors are doing what they can :)

Gabe and Nick are doing ok in CHINA. ALL I HEAR.. IT IS TOO HOT IN THERE. TOO HOT, TOO HOT... heheh ;)

Wednesday, July 1

Weird Times.


+++ Quick REminder. Reginas MRI on July 2nd, 5.30 PM in CHLA. I am nervous. More than ever before. This time around I have a very bad feeling. But again, most likely I am overthinking. After all REgina is not vomiting, not having headaches.
BUT, BUT, BUT-- she is favoring her left hand. STILL. AND eventhough she is on steroids, her right side is loosing its strenght. Today ( 1st of july) , was her worst day in balance wise. SHE IS IN GREAT SPIRITS :) THRIVING to do things, THRIVING TO LIVE AND SURVIVE, but her brain is not giving her a break .
ANyway.. If her MRI tomorrow is stable, then I am going to take her to my chiropractor to get her adjusted. It does not hurt to try. Her posture has been getting worse, and sometimes when I look at her sitting MY back starts to hurt. SO I am hoping there are some pinches nerves. ALSO her RIGHT leg and right hand are cooler than her left side. Very weird. Circulation problems?
I KNOW , I should be completely freeked out. BUT I am not. Seriously.. I am not. I am just worried. I know what it takes to make me go completely coocoooo... I know .... and even thinking about it makes me cry. So I try not to think about it...

AHH. Regina is such a sweatheart :) SInce nick and Gabe are in China, we have lot of Girl time. OUR house is quiet . TOO quiet. Not used to this silence... My favorite time is bedtime- getting REgina ready for bed. We have some deep conversations during this time... And today was no different.. REgina told me - Mommy, I dream about Long blond hair, and princess dresses and growing old. I dream about wearing a beautiful golden crown. I LOOK BEAUTIFUL. .... She pauses for a second and says. MOMMY< YOu are real queen. and daddy is king and Gabriel is Prince. ..... And she pauses... and smiles and smiles and tells me she loves and gives me biggest hug ever.
And you know what is my only thought that goes through my mind-- WHAT IF THIS IS HER LAST HUG? HEr last words...

I KNOW, I should not be thinking about it. But sometimes when I look at her I see sadness in her eyes. actually.. I see it often... ANd I wish it wasn't there. I wish I could help her more, . But saddly I can only support her and be there for her. :)

I really do love her very much.

Thursday, June 25

THANK YOU :)


THANK you from Gabriel. Thank you for Sending him birthday cards, and coming over to wish him happy birthday, Thank you for gifts and balloons :) Thank you for Making my special boys birthday extra special.
Today Gabriel and Nick are going to CHINA. We have been hugging gazzillion times today:)


Regina is also sad that Daddy and Gabriel are leaving. :( We were supposed to go to LA to see My Sisters keeper preview today, but Regina is coughing and has runny nose, and she told me she does not feel like doing so. That's ok. We are going to local theater whenever Regina feels like seeing this movie.

(( Lots of love))))

Tuesday, June 23

Enjoy These numbers...

LOOKS like FUN:( NOT.


POWER HEALTHFUND 750
POWER HEALTHFUND 750
Description
Amount Used Occurrences Used Days Used
Benefits Paid Year To Date / All Benefits $361,198.76 00000 00000
Ind. Out Of Pocket-In Network $9,148.57 00000 00000
Member Deductible $913.98 00000 00000
First Dollar Payment Member $1,500.00 00000 00000
Initial Trtmt Emerg/Injury $2,240.00 00001 00000
Initial Trtmt Emerg/Injury $0.00 00001 00000
Hospital Stop Loss Dollars $375,634.32 00000 00000
Hospital Stop Loss Dollars $9,384.80 00000 00000
Hospital Stop Loss Dollars $12,181.40 00000 00000
Hospital Stop Loss Dollars $26,314.46 00000 00000
Hospital Stop Loss Dollars $11,352.80 00000 00000
Inpatient Hospital Utilization Management Review Number Approved Days $0.00 00000 00018
Inpatient Hospital Utilization Management Review Number Approved Days $0.00 00000 00001
Inpatient Hospital Utilization Management Review Number Approved Days $0.00 00000 00001
Inpatient Hospital Utilization Management Review Number Approved Days $0.00 00000 00002
Inpatient Hospital Utilization Management Review Number Approved Days $0.00 00000 00002
Major Medical Paid Amount(CALENDAR YEAR) $343,509.72 00000 00000
Outpat Hosp Er Deduct / Copay $100.00 00000 00000
Participating Provider Member Copay $170.00 00000 00000
Speech Therapy Per Cal Year $0.00 00001 00000
Individual Stop Loss Non-Par Max $4,686.46 00000 00000
Family Deductible $1,000.00 00000 00000
First Dollar Payment Family $1,500.00 00000 00000
Family Out-Of-Pocket Occ/Agg - Participating Provider $10,000.00 00000 00000
Famliy Stop Loss Non-Par Max $4,811.46 00000 00000
First Dollar Period Of Disability Two Year Total $3,000.00 00000 00000
First Dollar Prior Year Paid $1,500.00 00000 00000
Lifetime Maximum - Major Medical $636,325.81 00000 00000
Total Medical/Last Quarter/Prescription Drug Individual Deductible Shared $913.98 00000 00000
Total Medical/Last Quarter/Prescription Drug Fam Deductible Shared $1,000.00 00000 00000
Total Medical/Last Quarter/Prescription Drug Individual Out-Of-Pocket Participating Provider $9,148.57 00000 00000
Total Medical/Last Quarter/Prescription Drug Fam Out-Of-Pocket Participating Provider $10,000.00 00000 00000

Thursday, June 18




SCHOOL IS OUT :):):) AAAAHHHHHHHHH THANK you all for your continuous support and love :) Thank you for Remembering REgina in your daily thougts, prayers, chants.. etc. You guys are THE BEST :) PS. REgina has big plans for her 10th birthday. YES, she is already planning and making quest list.. :) Silly REgina:)

It has been few days since I last posted. SO I thought I will let you know what is up around here.
FIRST, THANK you for sending Gabriel cards. HE got 2 today:) YOU should have seen his face when i told him GABRIEL YOU GOT MAIL. HE COULD not believe it. HE said are you sure it is for me.. AND when he opened it he just smiled biiiiig :)

Regina- Um, few issues here and there. We stopped her steroids last week. She was doing fine for 3 days without them, but then 2 days ago she was not using her right hand again, and was limping very badly :( , and also started sleeping more. aaahhh. SO I emailed Dr .Dhall and he agrees and Regina just needs steroids..
Can you imagine... SHE even started writing with her left hand using computers mouse etc. So back on steroids 1/4 mg per day. It seemed doing wonders with her.
Also her platelets have been low past few days. We are going to choc on Friday morning again, and then monday, wednesday, Friday for labs. Lot of driving but whet else can I do :) I love hanging out in hospital lobbys, waiting areas, seeing other families. It is kind of weird, but normal for us.:) I wish I saw you guys more often also :) Reginas COunts in general are good, so she is ok to play with friends, just platelets are our issue here :)

Saturday, June 13

Chemo, counts and more.




Oh, this round of oral chemo+ IV vincristine has been completed. Now we have to wait for a month to let here recover . Dr. Dhall did not give Regina prescription for a full dose, because we just want to see how she responds to this chemo. IF she does well, then we will repeat same chemo drugs in July BUT this time full dose ( 15 days instead of 10 days of oral crap).
On friday we had first Platelet Transfusion in CHOC outpatient Cancer institute infusion center. I LOVE IT. NOT that we got platelets,but I LOVE THAT PLACE :) I DO. There are lot of semi private "chairs", and in center is playarea for kids and kitchen corner if kids get hungry during long infusions.::)
REginas platelet transfusion went really well. CHOC does it little different than they do it in CHLA. Of course REgina got premeds first- Benadryl, tylenol and steroids. Then platelets, BUT instead 20 minute infusion, REgina got one hour infusion and platelets went throught that pump or whatever you call it, that lets meds drip evenly. loL Regina had no REactions to platelets which is good:)
Sadly Reginas counts are dropping again. Her ANC was 1200 on Friday. I am guessing it is even lower today. ANd her Hemoglobin is lower also 9,1. :( Most likely she will need another platelet transfusion on monday or wednesday. She is more tired now and naps little longer. ( sign that platelets are low )...

other than that nothing new. Last day of school will be on 18th of June. My baby Gabriel turns 8 on june 22. CAN I ask you all a favor... Past few years Gabriel has been pretty left out. We do things with him, but he still sees that REgina gets more cards and notes and gifts and everything else, and it makes him FRUSTRATED :(. Plase send him simple Birthday Card. I know it will chear him up, because IT IS FOR HIM ;)
Gabriels address...
Gabriel Tan
27715 Manor Hill Rd
Laguna Niguel
Ca, 92677

After His Birthday Gabriel and Nick will got to China for summer:) REgina and I will stay to CA .

Tuesday, June 9


Sorry for not updating for few days.
Regina has a nasty cold. Luckily her counts are still pretty good. On monday her anc was about 2000 something and white count 3,2 . Platelets are hanging around 55000 mark.
We are going to CHLA on wednesday to see Dr. Dhall and get REginas vincristine chemo ( tiny push throuh IV line).
SO we have been hanging out at home mostly.
We are doing Reginas Labs now in CHOC 3 times a week. 19 miles there, 19 miles back so we don't have to waste all day to drive to LA area.

On Sunday we attended Celebrate Life WIth Hope event. REgina did fine first hour, but then she got really tired and we had to leave early. We missed Jessica Simpsons performance I would have loved to have photo Op. with her. :)
( Copy and paste from their website)
n conjunction with National Cancer Survivor's Week, every June the HOPE Program at Childrens Hospital Los Angeles sponsors Celebrate Life with HOPE, an event honoring childhood cancer survivors and their families. As the largest annual event of its type in U.S., Celebrate Life with HOPE is a wonderful opportunity for our survivors and their families to get together with hospital staff and trainees, representatives of community and national support agencies, and major donors of the HOPE Program and CHLA. In addition to enjoying fun and food, the event emphasizes health promotion and wellness through attention to nutrition, self-care, and mind-body fitness. Held on the New York City backlot of Paramount Pictures, we are joined by celebrities and entertainers who make the day so absolutely special. Celebrate Life with HOPE emphasizes survivorship and life-long wellness as an on-going process that involves physical health and learning to maximize quality of life.

With over 1600 participants last year, we are expecting an even larger turnout this year. Sponsored by the HOPE Program in the Childrens Center for Cancer and Blood Diseases, this wonderful event is free to our children and families. The event is made possible by the philanthropic support of outstanding individuals, organizations, and businesses. Volunteers are actively recruited year-round to help stage this event, as well as donors of materials and funds. We are especially interested in welcoming actors and entertainers who are willing to share their time and talent with our families. These individuals help attract the media to get the word out that childhood cancer is a devastating disease, but together we are making a difference in survivorship and improved quality of life.

Thursday, June 4

:(


My baby is sick :( Poor REgina. She is coughing, and has runny nose. ALso her platelets are dropping fast. ANd because of low platelets she has been sleeping lot more. We are going to CHOC to check her labs again tomorrow morning/

Eventhough REgina is on steroids, today she had a bad day. She had hard time going up the stairs, her balance was off again... and she also had a headache. But that could be due to sinus infection she has .
I know her ANC is pretty high( around 5000) so she has some strength in her to fight off whatever she has.
She also misses her Daddy a lot. :( So does Gabriel.. I feel so sad for them:(
Regina and Gabriel want to go to Estonia this year because Regina wants to see her friend Krissu and eat some estonian sausage and white bread., but sadly i don't see this happening due to financial issues. I feel sad sad sad sad sad sad sad very very very sad. :( Also, myself, I have some important unfinished "business" up there but I guess I just have to postpone everything..

Regina also had a chance to visit school for 3 days. SHE was sooo happy to talk about her friends, and things she did, and LUNCH she ate. She truly did enjoy visiting her classmates and fave teachers... Poor her. I know she wants to be More active and do more things and go to more places. Maybe later.....

Myself - I am healing from my surgery allright. I am not pain free. My lower leg is feeling great, but my thigh, where that laser thing was inserted into vein, is still hurting. I am guessing it is more like nerve pain. because i do get burning feeling IN MY LEG.. And ALso my leg gets very tired . Not sure why is that. But oh well, it has only been one week and 2 days so, I have another week before I can start feeling better.
That's about it.

Tuesday, June 2

About Nick.


I always get asked. WHAT is my husband doing in China?? AND I always tell.. Ah, same old same old- microchips... LIKE I KNOW A LOT about it......
Anyway. I copy and paste something about him from his company website.:) Read if you dare :)
Well, I haven't told him this often or almost never, but I am very proud of what he has accomplished or what he is trying to accomplish :)

Dr. Nick Tan, CTO

Nianxiong Nick Tan received his B. Eng. and M. Eng. degrees in electronic engineering from the Department of Electronic Engineering of Tsinghua University, Beijing, China, in 1988 and 1991, respectively, and the Licentiate degree of Engineering and Ph. D. in applied electronics from the Department of Electrical Engineering of Linkoping University, Sweden in 1993 and 1994, respectively.

After receiving his Ph. D. in 1994, he started analog and mixed-signal activities at Ericsson’s Microelectronics Research Center in Stockholm, Sweden. In his capacity as a project manager, he managed, coordinated, and participated in several analog R&D projects for wideband radio, RF CMOS, VDSL, and optical transmission. In 1997, he became adjunct professor at Linkoping University, Sweden. He was accredited as the youngest professor in the history of Linkoping University by a Swedish newspaper.

In 1998, he was recruited as analog design manager by Globespan, Inc. (now merged with Conexant), Red Bank, NJ, then a pre-IPO startup (a spin off from Lucent/Bell Laboratory) working on DSL. He was shortly promoted to director of the analog operation. He was relocated to Irvine, CA in year 2000 after GlobeSpan went public and started a satellite analog design site in Southern California. In his role, he had been instrumental in setting up the analog group and strategizing product roadmaps. Besides his managerial role as the head of the department, he is the lead designer of first and second generation quad ADSL CO chip and first and second generation quad VDSL CO chip. These chips had been sold in tens of millions worldwide and had established GlobeSpan as one of the leading providers of xDSL chipsets.

In 2002, he became the youngest guest professor at the Dept. of Electronic Engineering of Tsinghua University, Beijing, China.

In 2003, he founded AnaLutions, Inc, an analog IC consulting firm in Southern California. He has since provided analog design consulting services. His major projects were circuit design for Implantable Cardioverter Defibrillator (ICD), circuit design for 10-Gbit optical links, and data converters.

In 2005, he became a full professor in Zhejian University, Hangzhou, China.

Dr. Tan is one of the early proponents of a systems approach for RF and mixed-signal IC design. He has the excellent combination of research and production experience. He has the outstanding track record of starting activities from zero and leading it all the way to market success. He holds 21 granted US patents. He has published over 60 journal and conference papers. He has also authored and co-authored two books and one book chapter on analog IC design. He was session chair for the 1995 and 1997 IEEE International Symposium on Circuits and Systems. He was co-editor for IEEE Circuits and Devices Magazine. He is the recipient of IEEE Circuits and Device Magazine Appreciation Award, year 2002. Dr. Tan is senior member of IEEE.

Friday, May 29

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 :)

Wednesday, May 27

:)



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 ;)

Monday, May 25

: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....

Thursday, May 21

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:):):):)

Tuesday, May 19

: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?

Monday, May 18

: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.

Monday, May 11

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

Thursday, May 7




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 :):):):):)