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 ;)

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.

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))))

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

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 :)

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 .

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.