Sunday, March 29
regina is doing great:) Really great. She still has weird mood changes, and one minute she is happy,and next crying, or tired, or cranky. BUT overall, AWESOME :)
we haven't started chemo yet. On monday Reginas labs will be checked, and we go from there.
We had few fun events over this past weekend.
Stellar Night gala was beautiful. Young talented entertainment business kids told our stories like they were us. It was very heartwarming to hear them talk. During that we were at backstage and we were not able to take pictures:) Kids got great goody bags with Nintendo DS lites in them, and CPK gift cards, and Hollywood video giftgards:) FOOD WAS SOO GOOD- Stuffed smoked chicken with wild rice and walnuts, great salad with lemon vinaigrette, and for dessert Ice cream pyramids.:)
After that we hang out in Bevery Hilton and were sad to leave, since we got great next to pool . Pretty much, we could step out from our room, and jump into pool, and weather on saturday was hot. Jamie Lee curties, Terri Hatcher ( spelling), from desperate housewife's, Corbin blue ( spelling from HSM), and many more stars showed up at this amazing event .
On Saturday we went to CHLA to get our family portraits taken. AGAIN, great foundation is doing it- Holdens Hope train. Regina did not feel so "hot" taking pics, so we did not get any individual pics take of her, but we got plenty of photos taken of us;)
After that- we had few hours before Nickelodeon kids choice awards and we went to Griffit observatory :):):):) Regina was sleeping by then and did not feel her best. Her and Nick stayed in car while Gabe and I walked around and took pics. WHEWWWW>
Kids choise awards was GRAZY. Worse than hanna montana concert. Creaming Preteens, teens and other "people".hehe. REgina enjoyed that Miley,and HSM, and , vanessa got awards. She was also exited to see Cameron on stage,and was dancing along Jonas Brothers performance.:) We left 10 minutes before ending of show, before we wanted to skip TRAFFIC. ... :) NOW we are home and hppy to be home...
OOOHH, I forgot. After we got home my friend called and " I kind of crashed their party"... We went to our local Time Out Tavern- where they had " Pimps 'n Ho's party going on --- FUN...
Monday, March 23
Regina is doing Really well:) No problems so far. eating, sleeping, playing, watching Tv, reading lot of books.
We went to CHLA today to get Reginas labs done. GRRRRRBRRRRURRRR. BLAH. YUCK.. Anyway, I was hoping that Reginas Platelets are about 100 000 by today, but no, they re not. They are about 72 000 - LOW to start her Cisplatin, CCNU and vincristine. DANG. I know I sound retarded, but I WANT HER ON CHEMO ALL THE TIME, which sadly is not an option. :(
Now we are going to wait another week. On Monday we get Reginas labs drawn, IF they are still LOW, then we will say Bye, Bye to this chemo and , welcome some new drugs into mix.(Tarceva at 85 mg/m2/day, oral cytoxan 50 mg PO Mon-Fri and Celebrex 200 mg PO BID)
It is not all sad. Regina really is doing Great. She is happy , she looks great, she acts pretty good, gives us hugs and kisses again. Takes good care of me ( Every time I cough - even a littlebit, SHE runs and gets me water :) AWWWW .
Also, on Friday we are going to Starlight Starbright gala- EXCITED. On Saturday we have 2 exiting events. Photo session in CHLA and and and--- ARE YOU READY FOR THIS------ NICKELODEON's Kids Choise Awards:D:D:D:D wohooooo:)
Finally , something SUPER exciting :)
Gabriel is doing better now, Since Nick is home. Listens better, acts better, does everything better:)
Myself I am kind of exhausted of doing nothing. I started doing weights in gym, and injured my sholder a little. very uncomfortable. I have to get back to My fave chiropractor, but have no desire to do so :( Just lazy:(
Wednesday, March 18
Things do not go always as planned. Well, Regina is doing awesome. SHe is amazing. Decadron has done wonders on her appetite, but also kind of messed up her mood. But that is not an issue right now.
We were supposed to start chemo today. Yesterday we had to do 12 hour urine collection ( from 8am till 8 PM ). Did that, took it with us to CHLA. But sadly chemo has to wait. Reginas counts have almost all recovered. Problem here is platelet count. It is safe her platelets are 79 000 right now, BUT to start chemo we have to have them at least 100 000.
Also, since Chemo has messed up Reginas hearing pretty badly, Dr. Dhall has to adjust Reginas chemo dose. So instead of full Cisplatin, she will only get half the strenght I believe. And her CCNU chemo also will be cut in half.
We will most likely get admitted next wednesday. We have lab draw on monday, and see how her counts will look :)
This round of chemo will be REginas last tough chemo. I wish there was effective and non toxic chemo ( DREAM ON , RIgHT), that will help her . We will most likely try other new drugs , but again, I have no idea what will happen in 2 months.
:D Thank you guys for your support :) I know there are few of you who wish you could do more for us. Sadly, I am horrible at asking help. You all say, it will be no trouble at all to you, and you are willing to help whenever I am asking. :) So I AM so sorry, if I dissapointed you in some way for not including you :( We still love you all and I am so happy that you guys exist :) It is nice to know that Whenever WE do need real help, you are there with open arms and warm heart :)
Sunday, March 15
Before I copy and past whole list of silly instructions how to use things I just let you know that Miss Regina is doing wonderful right now :) Regina is eating everything on site. Especially Tortilla chips with Mild salsa between her 3 main meals. She drinks 8 cups of warm milk per day and few more at night. Gives me lots of hugs and kisses and wants to plant whole backyard full of flowers, so she could pick them when they are blooming :) She also wishes she could go to Estonia again, because she thinks food in Estonia tastes better . YUP. All we do is talk food, watch food network, chop and bake and dice and slice.. :)
Well, the way I see it, things are good for now... But everything will change again on around 18th of March.
Now , laugh away...
On Sears hair dryer:
Do not use while sleeping.
On a bag of Fritos:
You could be a winner! No purchase necessary. Details inside.
On a bar of Dial soap:
Directions: Use like regular soap.
On some Swanson frozen dinners:
Serving suggestions: Defrost.
Printed on the bottom of Tesco Tiramisu dessert:
Do not turn upside down.
On Marks and Spencer Bread Pudding:
Product will be hot after heating.
On packaging for a Rowenta iron:
Do not iron clothes on body.
On Boot's Children's Cough Medicine:
Do not drive a car or operate machinery after taking this medication.
On Nytol Sleep Aid:
Warning: May cause drowsiness.
On most brands of Christmas lights:
For indoor or outdoor use only.
On a Japanese food processor:
Not to be used for the other use.
On Sainsbury's peanuts:
Warning: Contains nuts.
On an American Airlines packet of nuts:
Instructions: open packet, eat nuts.
On a child's Superman costume:
Wearing of this garment does not enable you to fly.
On a Swedish chain saw:
Do not attempt to stop chain with your hands or genitals.
On a toboggan:
Beware: Sledge may develop high speed under certain snow conditions.
On a knife sharpener:
Caution: knives are sharp.
On shin pads for cyclists:
Shin guards cannot protect any part of the body they do not cover.
On a take away coffee cup:
Caution: Hot beverages are hot.
Emergency safety procedures at a US summer camp:
In case of flood, proceed uphill. In case of flash flood proceed uphill quickly.
In a microwave oven manual:
Do not use for drying pets.
On the back of a pilot's seat in a Nato aircraft:
Seat must be facing forward for take-off and landing.
On the bottom of a cola bottle:
Do not open here.
On a Harry Potter wizards broom:
This broom does not actually fly.
On a box of aspirin:
Do not take if allergic to aspirin.
On a bottle of laundry detergent:
Remove clothing before distributing in washing machine.
On a muffin packet:
Remove wrapper, open mouth, insert muffin, eat.
In a kettle instruction manual:
The appliance is switched on by setting the 'ON/OFF' button to the 'ON' position.
On a ketchup bottle:
Instructions: Put on food.
On a bottle of rum:
Open bottle before drinking.
A car park sign:
Entrance only. Do not enter.
A sign in a street in Hong Kong:
Beware of people.
Rules on a tram in Prague:
Beware! To touch these wires is instant death. Anyone found doing so will be persecuted.
Sign on newly-renovated ramp entrance, USA:
Take care: new non-slip surface.
On a can of air freshener:
For use by trained personnel only.
On a bottle of baby lotion:
Keep away from children.
On a pair of socks bought in egypt:
Do not wash.
On a 500-piece jigsaw puzzle:
Some assembly required.
On a can of pepper spray used for self defense:
May irritate eyes.
On a Frisbee:
Warning: may contain small parts.
In a car handbook:
In order to get out of car, open door, get out lock doors, and then close doors.
On a packet of cashew nut pieces:
Warning: This product may contain residue of nuts.
Directions for mosquito repellant:
Replacing battery: replace old battery with a new one.
On a birthday card for a one year old:
Not suitable for children aged under 36 months or less.
In a hotel bedroom:
Please do not turn on TV except when in use.
In a lift in a Japanese hotel:
Push this button in case anything happens.
On a toilet cleaning brush:
Do not use orally.
On a can of Spray paint:
Do not spray in your face.
On a TV remote:
Not Dishwasher safe.
On a blowtorch:
Not used for drying hair.
On a washing machine inn a launderette:
No small children.
On a bottle of hair dye:
Do not use as Ice Cream topping.
On a push along lawn mower:
Not to be used as a hedge trimmer.
On a box of fireworks:
Do not put in mouth.
On the packaging for a wrist watch:
Warning this is not underwear! Do not attempt to put in pants.
In a dishwasher manual:
Do not allow children to play in dishwasher.
On a toaster:
Do not use underwater.
On a mattress:
Do not attempt to swallow.
Thursday, March 12
OH. Today was little hard for me. We had to be in CHLA 8.30 am. We started driving 6.15 AM and made it on time. Regina's audiology appointment went as expected. She has significant non reversible hair loss in both ears. Also this time loss was affecting her mid frequency range. NOT good. Because of this kind of loss, reginas speech will be also affected and we have to start speech therapy. I was told to do it through our local regional center ( but call me dumb, I have no idea what it is or where it is...). So I guess I have to do some online searching. Since Regina is still going to have chemo, we can't get her hearing aids. It has to wait. :(:(:(
After LA appointment we drove to CHOC ( in santa ana). Regina had her stitches removed today. She did cry since it did hurt :( BUT worse than that was Gabriel. he has some serious behavioral problems, and I am starting to be embarrassed by his attention seeking behaviour. AFter procedure Gabriel started screaming like baby, and ran back to check up room, and kept screaming scaring everybody in office. AND IT WAS FULL OFFICE. He screamed- I NEED A TOY NOW, I AM NOT LEAVING WITHOUT A TOY. and so on. HE REFUSED TO LEAVE. I wanted to smack him right there. and tell him snap out of it . BUT I did not. I just grabbed him by his arm and started pulling him out. HE Screaming like i was killing him or something. Eventually he calmed down , but it was no place for him to scream and seek attention like this. Also he misbehaved in audiology place. I told him to sit still and wait till Regina is done. He kept making stupid faces and fidgeting around, and making sounds. GRRR. I am not approving this kind of behavior from him. He is smart kid, but it does not give him right to act ICANDOWHATEVERIWANT...
And to top that. While we were leaving neurosurgery office, I was holding onto my both kids. We aproached the door, and when we wanted to get out, some other older ( grown up) cancer patient arrived in wheelchair with her sender. WELL, I was in no position to help her, not open her door, since they were blocking the door, and door was opening to outside... well she looked at me and started "screamin" that people these days have no manners, she should help us , she should do this that blah blah blah. I COULDN't even get out since she was blocking the doorway with her wheelchair.......
well, we finally got out and I heard her going on and on inside. I just kept quiet and kept going on my way. I am sure if I said I AM sorry.. She would have said- YOU SHOULD BE YOU WHITE TRASH.... Anyway. I just felt sad for her. I know she was on chemo ( I could see it), and most likely having really hard day. I wish her well.
When I got home , there was message in my answering machine from Erin. ( from Dr Loudons office). She apologised on that Lady's behalf. That just made my day. I did not expect apology, but when she did I just started crying. I just guess my " drama bucket" was little overflowing.
Actually... After Dr. Loudons office we did not go straight home. We went to Ikea to buy some of our favorite snacks and foods from their marketplace :)
Wednesday, March 11
We start chemo on 18th, or 19th,( not sure when we get a bed in CHLA). I just hope that she feels good enough on 27th of march.
LOS ANGELES, Feb. 26 /PRNewswire/ -- Starlight Children's Foundation will present Teri Hatcher with its 2009 "Heart of Gold Award" at the organization's annual "A Stellar Night" gala, presented by California Pizza Kitchen, on Friday, March 27, 2009 at 7 p.m. at The Beverly Hilton Hotel. Starlight's "Jacki Carlish Humanitarian of the Year Award" will be bestowed upon Nintendo of America and its President and COO, Reggie Fils-Aime. Starlight spokesperson Jamie Lee Curtis will present the awards, and Corbin Bleu and Chef Jeff Henderson will make a special appearance.
Hosted by Dave Koz, chaired by Starlight supporters board member Sarah Grover and CAA television executive Danny Grover, John Rosenberg and David Getson of gNet-Media, "A Stellar Night" will spotlight inspirational stories from Starlight families and pay tribute to humanitarians who are helping seriously ill children and their families cope with their pain, fear and isolation.
Famous for its Very Important Kid (VIK) Lounge, "A Stellar Night" invites adults to bring children to teach them firsthand about the importance of philanthropy and to share with them the impact that Starlight's programs have on families with seriously ill children...brightening their world, a little each day. Game Crazy is sponsoring this year's VIK Lounge.
Additional sponsors of "A Stellar Night" include Colgate-Palmolive Company, Nintendo of America Inc. and The Walt Disney Company.
Adult tickets are $500, children's tickets are $100, and both can be purchased at http://www.starlight.org/gala2009.
About Starlight Children's Foundation
When a child or teenager has a serious medical condition, everyone in the family is affected. For 25 years, Starlight Children's Foundation has been dedicated to helping seriously ill children and their families cope with their pain, fear and isolation through entertainment, education and family activities. Starlight's programs have been proven to distract children from their pain, help them better understand and manage their illnesses, and connect families facing similar challenges so that no one feels alone. Through a network of chapters and offices, Starlight provides ongoing support to children, parents and siblings in the U.S. and Canada with an array of outpatient, hospital-based and Web offerings. Programs are also delivered internationally through affiliates in Australia, Japan and the United Kingdom. More information: http://www.starlight.org.
*(LOGO 72dpi: Send2Press.com/mediaboom/09-0225-StarlightNt_72dpi.jpg)
This release was issued on behalf of the above organization by Send2Press(R), a unit of Neotrope(R). http://www.Send2Press.com
SOURCE Starlight Children's Foundation
Tuesday, March 10
Again. Regina has now the LOWEST pain tolerance ever. Last night she was awake crying screaming all night again. BUT THIS TIME it was due to back/hips/ tummy pain. She was not able to point out pain, because it was moving all over. It started last night after her MRI. When we were driving home she started crying because she can't sit and she hurts all over. I thought maybe it is a MRI contrast side effect. I gave her lot to drink. She seemed getting better. Around midnight she woke me up with loud AWWWW AWWW kind of cry. She is in bathroom trying to pee. Nothing hapened. And like that we stayed awake till it was time to wake up...
So we attended Gabriels Flag ceremony in his school and after that went to our local Mission Viejo ER. CRAP, what a mistake. We got LITTLE attention, NO SUGGESTIONS what might be wrong. NO PAIN MEDS, or no offers, and they wanted to discharge her while she was crying in pain....
Well, urine test showed she has Bladder infection , and they gave her antibiotics ( IV kinds). SHE was doing better for 30 minutes and then she started crying again.....
LUCKILY Dr. Dhall from CHLA called just after I had major meltdown and was about to pull my hair out, since everything was just not right.
Well, Decadron might be reason why her tummy hurts more than regular and why she is soo moody and irritable with us.
So we are lowering herr dose. It is 4 pm and we are finally home. BUT to be honest this will be my last time to use MISSION ER. I noticed that "grown ups" , got amazing attention.. and that just angered me....GRRRRR.
And now the best news for a while :):):):):):) Dr. Dhall told us that Reginas Brain looks slilghty BETTER :):):):):) WOHOOOOOHOOOHOHOOO. :)
Most likely we will start new round of chemo around 18th of march, and after her Audiology result her Cisplatin dose will be adjusted too. Reginas hearing seems to be worse :):):):):
BUT right now Reginas Upset tummy is asking for some Chilis. I am sure , tonight will be another PAINFUL night. :(:(:( She is already complaining that her tummy hurts.
Friday, March 6
We also went to mall and did some shopping . She brought herself club Penguin nintendo DS game. After that we got home .. and she got a mild headache...
Few hours later, 9 pm, she was crying that her head is burning inside. AND it hurts a lot. I had ran out of all the pain meds and olny had tylenol. Which of course did not work. SHE was awake all night. dosing off for only few minutes at a time.
Today her headache continued and I emaild Dr. Dhall. he prescribed some decadron..
Around 10 AM today we went to chla, because Reginas headache was still pretty bad. Dr. Dhall and barbara thought it is a great idea to give her some platelets. Anyway. IN chla she got premedicated for platelets( tylenol and Benadryl). gueSS WHAT. Last time she had reaction to platelets was in 2004 in St. Jude. she got some hives on her scull..Reginas nurse gave her some steroids and after while she started doing better. Also her headache got away...
I really think that Regina has THE best doctors in whole wide world:) In chla dr dhall decided that it would not hurt to get CT scan of her brain. Hour later we were in CT scan area and Reginas head was scanned. CT scan showd no significant change in ventricles, and no bleeding . GOOD NEWS ):)
On monday we have an MRI ( march 9th, 3 PM). We had date set on march 14th, but since regina has been complaining headaches, Dr. Dhall got us new closer date.
Right now Regina feels great. Her brain likes steroids. She is smiling again and eating dinner.
Last night was tough. I cryed , she cryed, She was awake ALL NIGHT and so was I. In morning I thought I could nap, but ater Dr, dhall called, my plans got cancelled. SO I drove to CHLA as fast as I could.
:) AHHHH> I am sooo tired today.. SOO TIRED...
Thank you for your continued prayers and get well thoughts:)
Wednesday, March 4
Regina is doing good. On monday we decided to go to Disneyland for few hours. After almost 3 hours of walking and waiting in lines, Regina finally got tired. Actually, her bones started hurting, and she almost fell asleep walking. After disney we went to see Dr. Loudon. His office is 6 miles from Disneyland. He still did not remove Reginas stiches. We are going to let them stay in for one more week.
We also saw Dr Dhall today. He thinks Regina looks good ( yeah). We will meet up with him on 18th of march to discuss MRI results ( MRI is on 14th of march).
On 12 of march Regina has audiology appointment. Reginas hearing has taken turn to worse, and I think it is great idea to get her some hearing aids. Actually, soon I will be needing them tooo. TV is always on max in our house, so If I start asking WHAT WHAT , or yell at you, it's not because i am mad at you... I just can't hear .. hehe:):):)
Sunday, March 1
Just some photos from This past weekend.
Regina is doing ok:) Not bad, not good. JUST fine :) She is napping more . She takes at least 3 hour nap every day, and goes to bed 7PM, and wakes up about 7 am every morning. She is eating little more, but still not half as much as she used to. Once in a while she gets headaches, and bone pains. her skin is very dry, and she is very sensitive to touch.