Friday, October 31

3 of u:)


Candy was good, neighbors were generous.... and LIFE is beautiful... i am sugar high...( mixed with wine)

Thursday, October 30

Happy Halloween :)



Happy Halloween from Prettiest of them all- Fairy Regina:)

Wednesday, October 29

( from Eric Davids Myspace blog)

lthough initiated by a shaken-baby brain injury case, the peition to change the way brain injuries are categorized will help kids with brain tumors, like my daughter.
Please consider signing the petition here:
http://www. thebrainproject. org/petition. asp
You can see the girl's story that triggered the petition and read about their interesting open source approach to medical records and information by visiting other parts of the site.



http://www.thebrainproject.org/petition.asp
I received this award from Patty :) Thank you. http://oldladylincoln.blogspot.com/


With this award comes these rules:

The winner may display the award on their site.
Link the person who presented you with the award.
Choose 7 blogs to receive the award.
Link to those blogs.



Stevens blog

http://stevenbell.blogspot.com/

Giannis Blog

http://giannigheno.blogspot.com/


Asher Benjamin

http://www.asherbenjamin.net/

Nami-Nami

http://nami-nami.blogspot.com/


Itching for Estonia

http://www.palun.blogspot.com/

Tartu- City of good Thoughts

http://emajoe.blogspot.com/

Pink is the new Blog

http://pinkisthenewblog.com/home/

Sunday, October 26








Working closely with Camp Ronald McDonald, We Can designed an award-winning camp especially for pediatric brain tumor patients and their families, combining traditional camp activities with the best of We Can programs. We Can campers are divided into five groups: Parents, Older Patients, Younger Patients, Older Siblings and Younger Siblings. Three times during the weekend, these groups participate in activities that address their particular needs. The parents have three guest speakers and a late night support group meeting. The children’s groups are led by We Can’s team of social workers, who help them feel comfortable talking about what it is like to live with brain cancer. The camp doctor (usually a neuro-oncologist) visits every group to answer questions and spends much of the weekend talking with family members in this non-stressful camp environment. In the Fall of 2006, We Can was able to offer a camp for Spanish-speaking families.( FROM WE CAN WEBSITE)
http://www.wecan.cc/index.html


Anyway, we had fun filled weekend in this special camp. We met new families, chit chatted with old friends and ate LOTS of food.:):):) Regina and Gabriel both loved Fishing and decorating pumpkins, and then both hated early morning hike to waterless falls ( THEY hated it because I dragged them there).

It was great to feel like a fish in a water, because all the other families KNEW exactly what we are going through. No stupid questions, NO I DO nOT UNDERStAND how can you do it comments. It was just what we needed. But of course I did shred some tears also. It was bit to much for me to handle. Other families with their sick children, their issues.. Their worries, their problems.... I can handle Reginas problems well, but if I see other children like this living happily, BUT with problems i jsut get emotional... Fight is far from over. To be honest , It is never over.. AND please, DO NOT ASK IF SHE WILL BE CURED? OR WHAT ARE Her CHANCES FOR SURVIVAL.
I DO NOT KNOW. And I will never know.

Wednesday, October 22

CHLA


(October 23d, 2005)




TOday was chemo day. Again, not the best day for us. Regina is getting tired of this never ending deal with needles and nurses. Today we got nurse that I have nothing against, but he is not our favorite. I just get feeling towards people and I was right to feel the way I did. Anyway... He is good, but not good enough.
What happened today.
  1. IV placement
  2. labs
  3. hydration ( one hour)
  4. Pentamidine ( Aerosol Antibiotics to protect lungs)
  5. Avastin - 30 minutes
  6. flush
  7. Irinotecan 90 minutes
  8. one hour hydration
  9. Dr DHall
Yeah, Regina hated IV part, She screamed her lungs out and I do not blame her. After MRI on nov. 3'd when we know more what is going on, we most likely get central line or PICC line put in again To eliminate poking. BUT it means more work for me- Flushing, showering with Regina, cleaning her line. etc... YUCK. YUCK YUCK. I love her , but I AM DONE. I am exhausted. And she is also getting there. She is starting to question WHY I have to do it, WHY I still have back pains, WHY I feel sick sometimes,WHY I get tired.. why why why.
MY question is also why. BUT Regardless of those whys --- SHE IS DOING AWESOME MOST OF THE TIME. Those WHYS come out before bedtime, when we have our bedtime routine hugs and kisses and books and tickles, and stupid jokes.... Then she asks away. AND I just wanna hide because I do not know WHY.

Reginas LABS were GREAT!!! WOHOOOO!!!! But I have a feeling they are starting to drop, since I am sensing little cold coming up pretty soon. And when she gets sick her platelets drop overnight at least 20 000 points.
Upcoming MRI- November 3d. Chemo November 5th.

Monday, October 20

:D






OH. To be honest, Disneyland Supposed to be happiest place on earth, but why in the world I feel so stressed out there. MASSES OF people, long waits to rides, overspriced food. etc...
Kids have fun no matter what, it is ME , Parent, who has to wine and complain...hehe I did loose it there couple of times, when BOTH kids started arguing what next, or we are hungry, or thirsty, or this or that isn't good... blahblah blah.. LUCkily we went there with our good Friends Maire and Steve and their kids- Travis and Maddison:)

We purchased ANNUAL Cal select passes - so you guys will be seeing lots of disney pictures in our near future... .

Saturday, October 18

Legoland:)










We went to Legoland today:) Overall It was very happy trip. Regina told me few times how EXITED SHE IS, and how much she enjoys walking and how happy I made her by taking her to LEGOLAND:) WE walked today 6 miles in legoland ( I have my step counter with me ;) ) and for my surprise NOT ONCE she complained that she is tired and wants to sit down. ONE who did complain was Gabriel.. but his issues are different...

Our day In Legoland did not start out very nice. While we were standing on line and waiting for our turn, there was one dad with 2 boys... Most likely 5-7 year old. Younger one was constantly complaining and just missbehaving. OLDER boy other hand was horrible. I did see that he had some sort of behavioral disability, because he was cutting lane, throwin himself on ground pounding his head to ground... AND his dad did not do much to control him.. But what made things worse , was what happened next. I guess boy got really tired of waiting for his turn and he had to take it out on someone. ANd guess who that someone was ---- REGINA. HI TOOK HIS FIST and punced reginas head with all his power. Everybody around us saw what happened and for a second I heard this AAAAAAA, and then whispering started. Regina handled it pretty well. No crying, She also saw that that boy had problems. She just told me, MOM, that boy has no manner, it is no ok to walk around and hit people. ... I just looked at boy s dad and said nothing... All I heard from him is I am sorry and that is is... NOt checking if reginas head Is ok, or explaning WHY his son would do such a horrible thing I am sorry, but that is unexeptable.
IF MY KID HAD done something like it, I WOULD HAVE taken her/him on a side and told them- THAT IS IT, we are going home. But oh no, that dad took his 2 kids and they all took a ride happily together. NO PUNISHMENT NOTHING. FUCK I SAY. I know my kids do missbehave time to time, BUT I always talk to them about it, and ask them apologize ( IF I AM AROuND)...

AFTER that incident my mood was ruined for couple of minutes, but it was such a nice weather, and kids were so happy.. I just tryed to forget what happened. ..

I was so upset that I started crying.

Tuesday, October 14

...



...Mommy, you know what.... And she bursts into tears..
Mommy, I really do not like having braintumors. They bother me sometimes and I can feel them.
What you mean? I ask.. You know, It is their fault that I do not have long hair. .

OK, Regina, but you have beautiful wig...

IT is not the same ( and she keeps crying)... I hate that they are stuck on me...

I really hated seeing her like this, so I had to act quick....

I told her -- Look- This fat ass is stuck on me, and I HATE IT, AND no matter what I do , it is still there... .....
After I said it-- Both of my kids looked at each other , then me... and started hysterically laughing--- MOMMY USED an A WORD... IT IS NOT OK TO USE A WORD.... ...


BUt, sadly, Regina is more aware what is going on, and she wants more answers each and every day,,, And i do not have answers to her questions...( I wish we had swings in our backyard. All Regina wants to do is to swing......

Wednesday, October 8

Day in CHLA





We have new favorite nurse..Cris:) She was so thoughtful, that she saved Regina bed. Usually when we arrive 10.30ish to CHLA, all 20 chairs/beds are taken, and we have to wait for it. But this time WE HAD it !! HA!!!

Our CHLA day started out kind of sad. Poor Regina. She had to be poked 3 times. Her veins are so used that scar tissue is already building up.. BUT, she did good . First 2 pokes she did not cry, but third poke made her cry with tears. I felt so bad for her. But what can you do. ( NO, WE DO NOT WANT CENTRAL LINE IN, NOT YET).

After that She had labs drawn, and she had to pee in a cup. During the one hour waiting time, we went to play room , and Regina did some fun crafts with Sunshine kids Amy:) We have not seen he since June, and I was really happy to see her.

Then her labs came back.. And they were AWESOME!!! Platelets 103ooo WOHOO. White count 5, 3 and anc 3,2. GOOD:)

Irinotecan did give he tummy ache , but she is doing good:)
Next apointment in 2 weeks :)

Saturday, October 4

Variety presents-- POWER OF YOUTH!!





It all started about 3 weeks ago. We got a big brown envelope from St Jude, that had blank paper in it.. BLANK, white paper. Few days later my friend Kathy called us and asked if we received this invite to Power of youth, that takes place in LA. Anyway, then I understood what that blank paper was... Invite...
So, I called ALSAC and asked them about, if they have sent Regina invitation to this wonderful event, and I was told that yes... I explained them what we got, and they sent us the right infromation.
http://www.variety.com/index.asp?layout=powerofyouth

So today was this event. It was in Los Angeles, across from Staples Center.
HUNDREDS of young entertainment industry celebrities showed up... I told REgina to walk head up high, and if she sees her favorite stars just ran to them and ask for autographs:):):) And that is what she did:):)
Event itself was great. Lot of food- made by Wolfgang Puck people,
giveaways, goody bags, photo booths, ice cream, snacks, drinks, and C E L E B R I T I E S. There were about 10 st Jude families also:) I knew couple of them, but most of them were new ones. :(:(:( Mitchel Musso from Hannah Montana performed, So you think you can dance dancers showed up, Wizzards from waverly place Celena COmez was there, iCarly, Zack and Cody crew, and hundreds more:)
I spoke one of ALSAC girl, and told her what is our situation, and I started crying telling her why we are not "active" st Jude patients anymore. I felt so sad, but at that time I had to go with my gut feeling... And she completely understood and was supportive on our desision.
I can't thank enough of all those people who were there to support St Jude:):)

Target Presents Variety’s Power of Youth is focused on encouraging the next generation of entertainment to support philanthropic and charitable causes, and to use their positions in popular culture to motivate others to do the same. St Jude Children’s Research Hospital is the exclusive beneficiary of Variety’s Power of Youth initiative, which since its launch in 2007 has raised more than $600,000.


Now, healtwise Regina is doing great. We had her labs checked on wednesday ( local lab). Our major concern is Platelest. IF they fall below 50 000 we have to reduce Chemo... BUT for our surprize-- now, remember that regina is on 3 different chemo drugs- Temodor- 60 mg, Irinotecan , 125 mg( I think) and Avastin ( not sure about dose). Although, chemo is toxic, her counts managed to improve--- Her Plateletes went from72000 last week to 130 000 this week-- Pretty much doubble. Her white count is better than ever and ANC is also improving.
That said, I still have hard time believing that her cancer is back. I have had those weird moments with myself, one point I am planning my funeral, and second moment i see her getting married. It sounds weird, but I am not sure how to find that perfect balance in my brain. I have way to many thought rush through my brain and all at once.. I just hope that SOON, someone tells us where we are at, because this constant worring is just not the best thing for me right now.

(( HUGS ))) to you all, and THANK YOU for checking in on us. I will update everything in here, and if you have not heard from us for a while then know that we have no news:)

Thursday, October 2

:)


Quick update:)
Regina is doing great :) She is full of energy and spunk. She still hates reading... and she reads like it is some kind of chore... She and Gabriel have bonded in some weird way. Every night , after we give Regina and Gabriel Kisses and hugs, and spin hugs, and tickles, and more kisses, they start whispering to each other. After I yell - QUIET, IT IS BED TIME. NO TALKING. they start giggling. And in few hours , when I go and check how they are doing, REgina has sneaked into Gabriels bed, and both sleep soundly. When I ask explanation next morning - Regina tells me GABRIEL ASKED her to come to his bed.

Anyway, they are cute together:)