Thursday...

Dear Disney Channel....( well, DVR)
Give me strength and energy to watch your show Hight School Musical 2 25th time tomorrow.
Regina drives me insane... in a good way. She watches this show EVERY day, she dances and copies Gabrielas moves , she Laughs at all the jokes EVERY day , and I have to pretend laught with her... Or she will ask- WHAt's the matter with you , Mommy, This is really funny. YOU HAVE TO LAUGH.... YAWN laugh...
Regina is cute... Her FAVORITE thing about this movie is--- MOMMY, YOU KNOW WHAT , HANNA MONTANA IS ON THIS MOVIE TO... BUT YOU HAVE TO WAIT TILL THE END TO SEE HER , because she only dances in the end , because she is really not in the movie, but she is in the movie, because .... um, um , um she is Hanna Montana.... lol
gabriel looks at me and tells me every time we watch High School Musical--- MOmmy, I am bored, this is so boring , I can't take it anymore,,,,,, and then he rans away crying...

And there I am sitting on sofa looking at my kids like they are from other planet.... oi, oi oi.... ;)

:D

I do not understand why time goes by so fast. In a week both of my kids start school. First grade for Gabriel and second for Regina. I do not look forward waking up every morning around 6 AM. NOT at all.

Anyway... I did go to CHLA today. Just for labs. Regina is one lucky girl. lol Today her labs were awesome concidering situation. Her platelet count was up to 72 000 or was it 71 000. Still, fron 41 000 to 71 000 NOT BAD AT ALL!!!!bHemoglobin 10.9, , ANC 1900- not bad....

I also got a call from Dr Dhall. He thinks that we do not have to go to hospital on friday and monday for labs. On saturday Regina will have an MRI and then he will give us a call about how it went..

Regina is doing awesome today. :) Her apetite is back and she has been asking to eat cucumbers all the time. Silly Regina :) She also wanted to bake chocolate chip cookies today. Which we did. And guess who ate 6 cookies right away--- ( somebody who is 29 years old). I promised that today starts diet, but the moment I saw those cookies baking in my oven- I forgot- DIET ? WHO? ME? NO!!! Cookie better than water and salad....

Gabriel is also doing great.:)

Little sad today. :(

Today is monday. Every monday , wednesday and Friday I have to take Regina to CHLA for labs.
I took her there today. Nurses drew her blood, shanged her picc line dressing, made us wait for an hour for labs. After we got lab resluts we were told that Reginas platelets are running low. :( they want her to have at least 50 000 , but she was on 41 000 mark. So nurse called to blood/platelets bank to get Reginas platelets . Afterwhile nurse comes to me and tells us bad news. BLOOD bANK IS EMPTY. NO PLATELETS, NO BLOOD :(::(:( E M P T Y :(:(:( So I asked her what should we do.
She called Dr Dhall and Dr Dhall told us to go home, since everything else on her labs looks great ( not sure what ANC was , but white cells and red cells had improved over weekend). We have to go back on wednesday for more labs, and see if her platelets recovered itself.

NO ALL OF YOU- go donate your platelets and blood to CHLA. ALL kids ( Regina included ) need your help :).

YAWN...

It is sooo nice to be home. Kids are playing, running around... fighting, laughing, dancing, calling each other stupid -- life is normal again...lol

Yesterday( saturday) we went to Reginas BFF's birthday in local Ice Palace ( ice skating place). I did not allow Regina to ice skate because I am worried her falling and hurting herself, and right now I can not afford her to get more injuries. But she did have fun anyway. She watched other kids skating, she ate pizza and cake, and had sleep over at Heathers House. She loves Heather very very much. :)

My boy Gabriel is something else. He is amazing 6 year old. At Ice palace he was littlebit afride at first. he told me that HE WILL NOT ICE SKATE because he is afride of falling. I told him- Please try, after first fall you are done. You do not have to skate any more.
BUT GUESS WHAT. After first fall he picked himself up, fell again, skated, fell , skated, fell skated more. I have not seen such a proud face on him for a long time. HE GOT IT. HE LEARNED TO ICE SKATE!!! I am so proud of him. He fell MILLION times, he hit his head, he fell on his face. .. BUT he just kept going like energizer bunny.... It was so nice to see him doing something he thought he'd hate, but instead he fell in love. . Today he asked me million times when we are going to skating again :) SOOn , I told him. SOON Gabriel :)

Guess what...

Nick had to pay wisit to CHLA because Reginas PICC line did not flush. I KNEW it will happen. I told he should stay to LA for wednesday night but he hurried home instead. And again... HE TOOK MY CAR. MY BEAUTIful not so environment friendly car to drive to LA. I WILL NOT DRIVE HIS manual benz.... no no no.

OK. Real reason for my post is this. Regina is going grazy plannin her birthday. She has everything allready planned. This year it has to be Hello Kitty theme.( I am sure she will change her mind in few days). She wants me to take her to party store , so we can spend fortune there. I told her NO NO NO. I will order her things online. Then he went to Nick and told him , MOMMY is mean, because she does not take me to party store.. hahaha...

And that is not it. She allready put together menu , AND I HAVE TO GET IT FOR HER. ( chillis food) SHE wants ALL her friends come over and play with her. ( No princesses this time). So what I was thinking is, I will do most likely open house from 12-7pm and let it up to kids to show up whenever they feel like it. If somebody wants to stay for sleepover I will gladly let them do so.

SHE wants me to make cupcakes because she wants to decorate them. She wants to play Pin the tail games, dress up, make jewelry ( her new fave thing to do), dance and listen hanna montana songs, watch movies, eat if SHE feels like it, and so on... SHE JUST KEPT telling me to write everything down so I WILL NOT forget.

She also gave me wish list- I POD, portable dvd player, portable CD player/with radio, new barbie movie characters, hello kitty stuff, princess stuff , jewelery beads --- I honestly think TV IS EVIL. She got all these ideas in hospital while watching tv and seeing those commercials and tv shows when kids use it. SHE DRIVES ME INSANE.
AND she is not finished yet. SHE wants me to sort her toys, bring them dows, OR I have to organize her room as nice as possible, so her friends can have lots of fun ??????/ WHAT???? WHOs da mom??? DO 8 YEAR OLDS REALLY BEHAVE THIS WAY???? OMG. WHAT HAPPENS WHEN THEY TURN 9??? whewwwwwwwww Miss boss in da house

FINALLY

WE ARE OUT .... OH MY GOSH. IT was hardest week for us. Reginas counts recovered really slowely this time. It took 7 days for ANC to show up. Yesterday it was 450 and today 1500. WOW. Regina did get some virus( runny nose), but since her lungs sound clean and she has no fever, dr is not worried about it.

Nick Is taking Regina home today, and we stay until Friday. Then we go back to CHLA for labs. On friday I will also sign out from Ronald McDonald House, because I feel like I can take this OC= LA traffic 3 times a week, and since her ANC is up, I do not have to worry about weird no explanation kind of fevers.

Saturday-

Sorry I have not updated for a while. Guess what- We are not on onco floor since they did not have available beds there. Instead we are on 6th floor that is rehabilitation floor. WE got a room ALL BY ourselves, since REgina in neutropinic( sp??) Nurses are more careful up there, they always enter her room wearing masks etc.

Regina has not had any fevers since she got admitted. She received blood and platelets twice and now her energy levels are finally back to normal. She is still on antibiotics to cover whatever they think she may have, but nothing has grown in cultures. Her ANC is still not present , which means we have to stay to hospital until ANC shows up. I guess with GCSF shots it should be readable with no time.
Also Rehab floor has beautiful high sealing with GIANT glass cealing ( dome cealing) and it is very sunny floor :) LOVE IT THERE> ;)

ER

Merry Christmas . Nick took Regina to ER since she had fever ( around 38 something). Right now they are in still ER because there are no available beds on onco. floor. Regina is on antibiotics and I AM hoping that nurses and doctors are trying to find out what causes fevers this time.

If you remember last time Regina was admitted right after platelet transfusion. AND this time exactly same thing. She has been very tired and sleepy since platelet transfusion and Nick told me that regina has been sleeping most of the time. Finally chemo is catching up with her.

0 ANC

Regina and Dr Dhall

Yep. We are this point AGAIN. Today Regina received platelets. Soon she may need hemoglobin.
ANC is 0 and we are giving her GCSF shots to give her immune system a little boost. We also have to stay away crowds ( right now 2 is a crowd.) PLEASE JUST SEND those NO FEVER VIBES to her way. ( Thank YOU)

We also saw Reginas dr today. Dr Dhall told us that everything is going well. Regina looks good, sounds good. He did notice that Reginas left side is littlebit stronger than Right ( squeesez and kicks), but so I mine. lol ;) Regina has lost 1,4 lbs total since june 22nd. Her apetite is not the best right now, and finally she is getting really sensitive to smells and tastes. She can not take her regular vitamins because they make her throw up. Perfumes just make her nausiated, and she can smell bad breath miles away. ;) lol
I am home today. Nick is in LA with Regina. I just need to do some laundry and drink my Slim Fast coctails :)

Sunday...

Regina has had wonderful week. She is doing great. She does look little pale, but that is normal concidering her condition. Her ANC is 750 ( very low), and her hemoglobin was 10,1 ( very close to 8). She has been playing and having fun with Gabriel. We are still in RMDH since we starting to love LA area. ;) Downtown area is beautiful. MY dh was watching after kids while I was enjoying different Estonia activities - fair , theater, ball - I crashed ball in my jeans;) ), bub... It was lots of fun. Estonian Los Angeles play group is VERY good.

OK. I really have nothing else to say. Regina continues to do well and that's all I care about :) If you are in LA area and want to visit Regina let me know:) We love HEALTHY guests :)

:)

We are done with inpatient chemo. Guess our luck-- YES, we got our favorite room again- 430 C. lol Nurses make fun of us allready because of our luck. haha

Regina did very well with chemo. Again- same as last time- she threw up once on monday and then once on tuesday. We did have lots of fun in hospital. Diego ( from dora the explorer) came by, to promote his live show. ;). Few more therapy dogs showed up to cheer up patients.. and that's it.

Now, I really do not have lot to say to you. Dr Dhall and Finlay sound enthusiatic about Reginas treatment plan and they are happy that tumors responded to chemo so well, but there are few dark areas that they are not sure. Anyway- dr's are not sure what is happening in her brain. Something is reaching to brain stem, - it could be( necrosis) dead tissue( brownish fluids) OR it could be tumor growing . I asked about possiblity to remove it, but since it is in s brain stem there nothing much to do. She is sheduled to have another MRi sometimes in September. To see what is going on. Also those other tumors- Dr Dhall wants to get all reginas previous MRIs for evaluation to see if there is something that explains what is going on. Anyway.. It is all very confusing and as much I want to believe doctors I am not sure. Regina is doing great, she really is, and so it must mean that everything is going well.
Talk to you later, to make you even more confused.

Monday, 6th of August :)

Good Morning. We had good weekend. Regina had couple of fun playdates, and Nick and I finally got to go to see movie. We went to see Bourn Identity. Loved it:)

I just called to CHLA to check if there is bed available for Regina, so we can drive there and start chemo. I was told that they have no idea when bed will be ready because they are FULL. But I was told it will be sometimes today. So I guess I am going to do some wating. :)

We got a room in Ronald McDonald house in LA. So that is covered!!! Only thing I do not look forward right now is- un packing, admitting Regina to hospital... etc... ALl those fun things ...

MRI Update:)

Hi you all!!! I am sorry I made you wait so long. Regina had her MRI today. As you know, she does MRI's without sedation. She fell asleep during her MRI and was snoring really loud. :)

Reginas DR called me about hour ago and told us GOOD NEWS. Tumors are shrinking.!!!!!!! That all we need to hear- Stable or Shrinking:):):):):):):): YES!!!!! On tuesday they will have meeting where they discuss and compare her previous and recent scans. After Tuesday we will have more information about Reginas situation:) But so far so good!!!

We will be going home tomorrow ( Friday). We will spend weekend home and then on MONDAY morning we will travel back to CHLA to start second round of chemo. Exactly same chemo. They actually had to take one dose of Irinotecan off from her shedule since she only tolerated 2 weeks of( 2 doses) of Irinotecan:)

Right now regina is doing AWESOME!!! She is unbelivable. SHe is happy and grazy almost 8 year old!!!! I can not keep up with her!!!! :)
Keep those prayers coming :)