We were "forced" to go to CHLA today. Sadly, ( yup, crying here), our insurance does not authorize anymore home blood draws. :(:(:(:(: Well, F you BLUE CROSS . YOU SUCK. BUT That is not it.... Since REginas neurosurgeon Dr. Loudon is OUT OF NETWORK doctor. our deductible is 20 000 plus whatever dr. decides to charge us : () GOT a just love this . SO if you have lot of money hanging around, or know any great foundations who can help with deductibles let us know. WE NEED all the help we can get.

SO, back to labs. REginas platelets had dropped again. Barbara ( our care manager) wasn't very eager to give REgina transfusion- I get it, REgina had few horrible experiences, and if immune system is down, platelets get eaten fast by Reginas marrow or whatever..
BUT SHE NEEDED them. SHe has been sleeping and taking 4 hour naps, not eating , feeling tired and down. After this transfusion she was BACK :) At home she finally ate more than usual again..

Also, guess what. You never guess...... PARIS HILTON visited CHLA today. YUP. SHe was all pretty , wearing HIGH heals, pretty spring dress, with her perfect hair, and perfect fuckin' skin and perfect poses... UGH...... SHE IS SO MUCH PRETTIER IN PERSON... SHe was beading with cancer kids today- FOR ALMOST 3 hours. She did good. I give her Credit for doing this. But of course, she had to leave whole box of her "brand" stuff . So pretty much this trip was promoting her stuff. Since REgina really did not care much for her, we left play area and went back to her bed... But then one ( our fave Nurse) told us to check out play area because they have some "free" stuff .. SO I RAN to play area, but of course, I got leftovers ;) Just Paris Hilton watch and later on nurses brought belt for REgina :)


We are going back to CHLA on Monday for labs and on Thursday for labs.:)
ON friday , May 8th I will turn 31 years old.... AAAHHHHHH

:(:(:(:(

Poor REgina. She is little down again. She has been tired all weekend along. On Friday we had her labs drawn in our house. Sadly, her platelets were low again, but since it was too late, we did not go to CHLA. I just called them and let them know what was going on. Dr. Dhall asked us to monitor Regina and get labs drawn today again :(... Todays labs were much worse than On friday. Platelets 35 000 and white count 1,1.. Not sure WHy it is dropping again. I just hope that REgina is not getting sick.
Anyway, we are going to CHLA tomorrow ( tuesday) for platelet transfusion. Hope it goes smoothly. NICK is Back in Asia. FUN. SOmething always happens when he is away. ALWAYS. I guess REgina is just misses him like Crazy and that makes her sick :(

Gabriel has STAR(

Standardized Testing and Reporting

testing done this week. Serious stuff. He has been studing hard, Reading, reviewing, printing out some papers to do more reviews:) Hope he scores high:) I know he does :) Thankfully there is no extra homework this week. Just 20 minutes of Reading, reviewing important study materials and lots of rest. OF course 30 minutes of piano also per day..:)
That's about it. If you are in LA area tomorrow, come and visit us in CHLA 5th floor, outpatient tower- Day hospital. We will be there from 9 am till 4 pmish :)

Regina is doing Great again:) She really is . On monday she had one more platelet transfusion, but this time platelets got special treatment and thanks to that, she did not get any reactions to them. AND the best part is, her platelets did not drop that much since monday :) I am so thankful for that. Also , her ANC is on the RISE:) today it was 580. GOOD BYE GREEN MASKS:)

Our next CHLA visit is on may 18th- MRI and after that DR. Dhall - may 20th. Till then we just have to hope that tumors keep shrinking and dissapear forever and Regina gets her Happily Ever After.

That is about it. :) Once again, I want to thank you for your support and understanding and Great meals and restaurant giftcards, and offers to help with our cleaning chores( you know who you are ;) ) I apreciate all of your thougths and prayers and hugs and kisses and handshakes and rest of it:)

Regina misses her friends. She misses school. She misses her favorite teachers and reccess, but she is not ready to go to school. She gets tired very easily, and falls easily, and bumps into things once in a while. Her feelings get hurt easily and she is not as "bright" as she used to. SHE IS AWESOME and funny and cute and strong little girl, but there are things about her that have changed. It is still Regina in there, but Regina with something extra :) And sometimes it is hard for her to understand WHO nobody understands her :(

ALSO, I forgot to mention SOMETHING COOL:) One of our Fave organizations - Sunshine kids called us the other day ( Andrew Sacks - "The Closer") and asked if Regina is interesting going to Britney Spears concert :) OF COURSE SHE WAS. She loves Britney :) So we got 4 tickets and went to Staples center. Regina liked Pussycat Dolls, She loved Circus part, but finally, when Britney came to stage, she was tired ( 2 hours later), so we listened 5 britney songs and headed home :) ) BUT concert was AWESOME :) PCD are so beautiful and I LOVE LOVE LOVE their dance moves. HOT :)

Poor Baby :(

Last week Regina had life threatening reaction to platelets. Before transfusion she was given all necessary pre med( benadryl, tylenol and steroids). First 15 minutes were fine. She did great. Watched her movie - Cinderella this time. Suddenly she raised her arm and asked me- MOMMY, SOMETHING IS WRONG, what is wrong with my hand. I rushed over and noticed that she had huge raised pumps, lines on her hand. I ran over to nurses station and informed them what was going on. Suddenly room was full of nurses, doctors mashines ... Suddenly her head, cheeks, ears, legs, tummy were covered and swollen. She was given shot of epinephrine. Poor Regina . I was scared, really really scared. After receiving epinephrine things started getting better. HIVES and swelling dissapeared as suddenly as it appeared. By then she was exchausted and fell asleep.:(

That was her 3d reaction to platelets in a row. We are not really sure what can be done to give her platelets because next time could be fatal. her body has strong antibodies and is rejecting others. I was told that there is way- they have to do it without preservatives( platelets). It will take longer to get them and they will last in Regina for a shorter period of time.
But I am still scared.... Most of you will ask WHY she had reaction, because she had platelets SO MANY TIMES before.. WELL, that is good enough reason. Reginas body says - NO MORE CRAP. I am done


Right now she is doing good. it is sunday I know her platelet count is very low because she has tiny purple dots on her legs,and her gums are bleeding a little :( Keep her in your thoughs tonight. We are going to CHLA tomorrow morning for labs ((())))

We are once again in CHLA. Regina has been doing really great. No more hives since Wednesday. Today her labs get drawn again and I am not sure yet what bloodbank has for us. There is big possibility that Regina may needplatelets today, but since her antibodies are strong she may have even worse reaction to them... Most likely they have to make Regina"custom" made bag without any preservatives. Anyway. I am very nervous and hope that some weird way her platelets have recovered:)

Regina needs your get well wishes. She had life thretenig reaction to platelets today. Hope that CHLA blood bank has a solution for Reginas continuos problem with platelets. Her ANC is 0 right now and I am sure Regina needs at least 2 more transfusions:(
Keep your fingers crossed that she recovers fast:)

Long day In CHLA

Today was super long day in CHLA. Monday morning we had option care nurse come and draw REginas labs. By 4 PM I FINALLY got her lab results and noticed that her hemoglobin count was low ( 7,9 ), usually she gets blood transfusion when it falls below 8. Also, her platelets were low side, but still stable, so no problem there. So I called in to Day Hospital in CHLA and scheduled Blood transfusion . We arrived to CHLA 9.30 AM and got back home 6 pm. Blood transfusion lasted 4 hours , before that pre meds- Benadryl, tylenol and steroids to prevent allergic reaction. :) After Receiving Benadryl Regina fell asleep right away :) she needs more sleep. She is not the best night sleeper at this moment. Wakes up and talks to us and is all lovey dovey :)

Also, her apetite is not present at all. SHE is hardly EATING anything solid :( She drinks lot of milk, but eating... EEHHH. Hope that her counts recover fast and she starts feeling better soon again.
My house is complete mess right now. I CAN't find strength to organise or clean. I do my minor here and ther's but that is about it. I don't feel like doing much these days at all :((:( I know soon I will be better, but when Regina is down I am down.
We have Option Care nurse come inn tomorrow again.

PS. I just saw a tiny preview on TV about My Sisters Keeper, and seems like ET ( entertainment Tonight) will be talking about it tomorrow ( wednesday). :):):):):)

LUV to you all :)

DI

MadLibs- Angry letter to Santa....

gabriel is into MadLibs and we bought full version for iPhone. Here is his latest story.

Santa. Or should I call you ugly stupid St. Diana. All I asked for this year was an plane, and what did you give me? You gave me a tree. What didi I do wrong? I was a good boy, I cleaned the tea off of the floor when I spilled it. I scrubbed the sugar off of the shower walls when I was asked to. I even kissed my sister when my parents went out. My parents got me a lousy toilet for my birthday., So I figured I could count on you on Christmas. I guess I was wrong, just so you know I was up all night baking those macaroni cookies for you to eat. I laid the out on plate with an ice cold glass of water beside them and go figure- you ate the cookies but you gave me a stinky presents anyway. Next year I ope your clean mean ass gets stuck coming down the chimney because as soon as I hear that happened I'm going to start a fire. And oh yeah, tellyour octupus to be prepeared too
Sincerely your lovely pal,Gabiel.

O dramzzz

S
On Friday we went to CHLA for labs and platelets and vincristine. Reginas blood counts are low and she did need platelets. Since in past she had allergic reactions to platelets , she was pre medicated with benadryl, tylenol and steroids. After 40 minute platelet transfusion Regina sat up and i noticed HUUUUGEEEE bump on her forehead like she has fallen down and hit her head, and it was little bluish. Reginas nurse was just finishig flushing Reginas broviac line and said that it does not look like allergic reaction and AM I sure that it was not there. OF COURSE I was sure. I stare at Reginas head like hawk 24/7 and know every little change that there is. So Regina sat up and started scratching herself. OH boy she had one more bad reaction to platelets, and this time it was quite severe. All over her body. So dr. came in and gave her more meds and in 40 min. her body was almost clear.
BUT what worried us was that bump on her forehead. Dr. Called Oncologist ( dr Dhall and finlay were not present, so some new dr. WHO NEVER SAW us before and had no idea what was going on came to see her). For my like he was little to "angry" and tough, plus, I did not like his handshake- very limp and not confident. DID NOT LIKE IT AT ALL.
I tryed to explane him that , Regna had those "bumps" before and it is most likely fluids leaking and causing those bumps, and it is ok, and it will go away.. BUT he DID NOT givE UP. HE made me call neurosuregy office and did not leave before I made phonecall and told them what is up.. ( I UNDERSTAND HE WAS WORRIED), but he ignored my explanation completely... whatever.... I was worried to since that bump was hard this time, and not soft...
SO I MADE APPOINTMENT TO SEE DR . Muhonen on tuesday. BUT I had a urge to call them back later and tell them - YOU know what, never mind, I just did it to please doctor. REGINA IS FINE AND HER BUMP is almost gone.
her bump now is completely gone and most likely since her blood pressure rised, and she was down during this platelet transfusion, fluids found a tiny hole and escaped...

She is feeling good right now. :)

PS. My laundry mashine broke middle of full load. I HAD TO HAND squeeze water out of all my clothes ( OH MY EFFIN' gawd).

Chemo. Round something something...Lost count...

5 days post chemo. Counts are dropping. Platelets are LOW again. Well,not 50 000 LOW, but close enough. I hope they don't drop 20 000 points overnight. Also hemoglobin is dropping and white count and ANC and and and more....
Regina is feeling alrighty. She has aches and pains here and there, and is not eating much, but is asking for food. She is drinking lots of milk all through the day.

I know Regina will hate me for writing about this but I have to .
Since chemo makes her super constipated and fruits do not taste very good for her now. She went to bathroom. Suddenly i hear this sweet high pitched voice. those, who have heard Regina speak, know what I am talking about.
I hear her calling my name- " Mommy, Mommy, mommy". I ran to the bathroom to see what is going on.
Regina has saddest face on and I don't get it at first. Then her sad face changes into a cute shy grin and she pulls her head between her sholders And she asks," Mommy, I think you should bring me banana now, because I think it will help me poop better, Right?"....

Well, I told her she can have her banana later.... but sadly after one bite, banana suddenly did not taste that well.....

Regina.

Regina this around is very different from last round of Chemo. Since she only got 1/2the dose of Cisplatin, she is doing MUCH better. last time she was throwing up ( week straight), not eating not drinking not doing anything at all. she was dehydrated 3 days after chemo and was doing Horrible overall.
BUT this time, She has not throw up ONCE since chemo. WOHOOO. SHE is snacking all through the day, ( I am not forcing her to eat). IF she is ready , she will eat. AND if she gets dehydrated there is ER right around the corner. SHE is drinking lots and lots of milk. Today she even walked upstairs BY herself couple of times and played with Gabriel. :) Very good girl:)
We had Option Care nurse come in today to draw her labs, BUT in some weird way nobody faxed me results yet. ( it is 8.15 pm). I know she is still fine, but I am still curious to find out where are we at right now.

We are going to CHLA on Friday, since I am afraid that her platelets will be down by then and I better go to the source right away, instead of waiting till 2 pm, then driving to CHLA and then waiting another few hours.. .:

Gabriel has Spring break right now. I feel so bad, because we can't really take him anywhere:(. It would be so nice to drive to Palm springs, or Northern CA, but we cant :( . Nick is going to take him to Dave and Busters on Wednesday for some games and food :) Gabriel loves dave and Busters :) he also wants to go to Legoland ( BUT only because he could buy more legos .. Weirdo :)
That's about it. :)

OH. How could I forget.
Past 2 weeks we got dinners delivered to our house. THANK YOU SO MUCH. YOu have no idea how helpful you guys have been. EVEN THOUGH I LOVE cooking. It is one of my favorite times of day. I needed break from it. :) WE all enjoyed great pasta dishes, FISH, wine, and desserts.:). You guys are truly amazing. ( tissue time ).
Also, I want to thank you for gift cards to Chilis/macaroni grill). ( Even though these restaurants were voted top 10 unhealthiest restaurants to eating.) WE LOVE THEM. WE LOVE CHILIS and Macaroni GRILL. ( myself, I more into drinks there wink wink. ;) .

I hope that Regina keeps improving and things start getting better from now on. Thank you for your continuous support and kind words :)

BOOOO>..

CHLA has no beds available righ now. LET'S hope that tomorrow is better day :)
Regina has been steroid free now for 4 days. SHE IS sleepier that usual. Today she took 4 hour nap, and then wanted to go to bed 6PM. I just hope it's not tumors growing and making her sleepier. Also her appetite is back to somewhat normal. Not eating as much as before, but STILL eating enough- NORMAL enough.

Myself I went to see my "vein" doctor. Dr Lane. I have some giant varicose veins on my left leg, and they are getting worse. Well, Dr Lane thinks that only combination of laser surgery and stripping will work, and I am good candidate for it. SO in about 3 weeks I will get better looking left leg, and can finally wear mini skirt without compression stocking :). Also, since varicose eins are considered "cosmetic" procedure, Insurances usually do not want to cover it. HOPe that they cover at least some portion of it. :)