ANC.--Update January first...

++++We are getting out today :):):) ( january first )+++

One of our Fave Child life workers and Regina.
Thank Kathy for Great New year wishes. BTW. Reginas ANC decided to finally show up. it is 560 now. She had 2 sets of labs drawn today. She is off fluids. BUT now she has another issue. More diarrhea... Nick is in hospital with him, because I was just way to tired to function in hospital environment. MOST of 4th floor rooms are empty. they just sent whole bunch of people home today. Regina has to stay for at least 3 more days- Antibiotics...

Now , that this year is almost over- in 4 hours. I would have NEVER ever imagined that we will be doing what we are doing right now. Regina was talking all year long going to Big Bear to do more snowboarding. Then she wanted to go to Estonia... Then she wanted more sleepovers with her friends.... I am sure relapse was not one of her plans, but hey, if life gives you lemons , you just have to make some sweeeet lemonade... And I am sure we have made plenty of lemonade to last a lifetime.

We are so lucky and happy to have Regina with us . Not in Million years we would have thought that chemo works so well and REgina is pretty much cancer free. Not in million years would I have thought that I would have so much patience and energy to deal with situation the way I am dealing . Not in million years would I have thought that I would ever Love CHLA and Dr Dhall... But we do. We all do. We love our 4th floor nurses , we love Dr Dhall and Finlay and other doctors who have very funky names ;), we love our childlife girls , who always find a moment to fill Reginas wishes for that thay...

We are so grateful for Laguna Niguel Elementary school and it's staff. They have been so understanding and helpful and I am just amazed the support I have been getting from them.

AND most of all, I would have never ever thought that we are surrounded with such great people all around the world. We are humbled by every card, letter, phone call, package, advice, help... etc. We are so blessed to have you all in our life... I just hope that you understand that we do care and appreciate your support. I am sorry for not sending out thank you cards for all of you. I just hope that you all will be there whenever we will need you( most of the time my Needs list consists of one thing- TAKE good care of my boy Gabriel ;) ) ...

Anyway, this past months have been very exhausting months, But outcome speaks to itself. We had HOPE, and We have Regina. Never stop hoping for a Miracle. Never:)

Happy Ney Year

Still in Hospital.

Regina is doing better. Her white count is slowly coming up, but they still do not calculate ANC... :(:(:( We will be moving to fourth floor today ( 429) I think. Not sure, but our " source" told us most likely we will be up today.
THANKS GOD!!! I have not slept for 3 nights. Since PiCU does not have beds next to patient bed, Then I had to sleep in same bed with Regina, BUT those beds are way to small, and Instead of sleeping I spent all my nights watching some stupid infomercials...
Anyway, just hanging in there. But It has been 1o days and i had enough.
Happy New Year to you guys :)

GO DONATE PLATELETS!!!!

Our wishlist....

Regina needs platelets and hospital only has one bag of platelets. PLEASE GO DONATE PLATELETS. Regina needs then now more than ever. IF she does not get platelets, it may really happen that her brain starts bleeding... We can't let her platelet count drop to low

Nick is trying to donate today, we'll see how it goes.

Please send those GO AWAY HEADACHE kind of thought to Reginas way. She had headache last night and was unable to sleep because of that.
I am home with Gabriel. I MISSED MY HOME. I MISSED CLEANING IT. I missed smell of it, I missed my bed, my things, my shower, my closet. EVerYTHiNG... And most of all--I missed my wine and cheese... Oh the power of simple things.:)


PLEASE GO And DONATE PLATELETS. SHE NEEDS THEM!!!!!!

I am so glad I did not have wireless connection for few days.

We had lots of drama here In CHLA. It all started day after Christmas. Regina woke up super pale and was throwing up - A LOT!! Then she started complaining headaches. She had all th signs that something wrong in her brain was going on. So doctors ordered her CT scan. She was send downstairs to do CT scan. When we got back to our room, there were few people waiting for us.
We were told- CT scan picked up something that appears to be bleeding . I started panicking. We saw few doctors. Within that 30 minute frame and all of us told us that not to worry, since we got it so early, Regina is safe. BUT to be even on a safer side we will move you to Pediatric intensive care unit. I was panicking even more.
Reginas platelet count was 34 000 and usually bleeding in brain happens when Platelet count is low. So Regina was given 2 bags of platelets and her platelet count was pumped up to 131 000.

Brain MRI was ordered to figure out how bad that bleeding is. I was patiently waiting. 40 minutes seemed like few hours. After it was done we went back to our PICU room H, and waited.

Doctor came in. I was fearing for the worst - BUT WE WERE TOLD THAT MRI PICKED UP NO BLEEDING!!!! WOHOOOOOOOHOOOOHOOO!!!! What looked like drops of blood on CT scan , was just calcification ( calcium deposits). SInce CT scan is ony black and white, it looked like blood BUT IT WAS NOT!!!!!!

OMG. What a relief. Now, what caused Regina to throw up and have headaches was most likely some yucky virus , not eating for few days, just being stuck in same room for 7 days... etc. Reasons are few.... BUT bleeding in her brain, new brain tumors IS NOT THE CASE. Reginas brain is still stable and hopefully it remains stable for many years to come :):):)

Now- Happy Anniversary to us.... My dh left me a great gift to RMDH - Wireless G plus MIMO usb Network adapter. Hopefully this will help me contact to wireless EVERYWHERE>.... ;)

Happy Holidays.

Merry Christmas.
Reginas ANC is 0. White count down.... She already received blood and platelet transfusions. She is eating again.
She still got runny nose and cough, but her chest sounds fine. doctors think it is just head cold, and will run it's course. But since her and is down, we are on a look out for fevers. IF fevers do not show up , then we will get out in 5 day. If she gets fever, that will guarantee our New Years eve in CHLA.

Thank you for checking in on us.
Christmas in CHLA was not that bad. We saw few santas, Regina got about 14 barbies, Bratz, my scenes.. ( SHE THANKS HER ANGEL JUDY, FOR SENDING HER HANNAH MONTANA DOLL and clothes). And Angel ANGIE FOR COOL stuff ( that's what she said, when I asked how she likes her things- COOL STUFF). lol

My husband and I are celebrating our 9th wedding anniversary on December 28th. Most likely we will be eating Hospital food and drinking lots of water..lol...

Have a safe holiday season,and do not over shop with those after holiday sales...

Regina send you all huge Xmas hug :)

We got elfed.

http://www.elfyourself.com/?id=1770155032

Merry Christmas

Regina wishes all of you Merry Christmas and Happy holidays:) She is doing great now. Her appetite is slowly returning and she has been playing with Gabriel. Her mouth herpes is healed.
But Reginas ANC went finally big fat zero, so we still have to be inpatients until her ANC is back to 500 ( at least).

Christmas in CHLA is not that boring. Santa jumps in once in a while, organizations and individuals bring children gifts ( toys of course), everybody is happy and merry. We are to. :) Gabriel is little bored here with us, since Mommy Diana lost DS charger ,, Hm, I have no idea where I left it,but gabriel has been begging santa every night, so santa could bring him new DS charger...lol He was even willing to carry my bag , so santa could see he is on the Nice List....;)

I hope you all are having wonderful Christmas. And stay on the Nice list :)

Regina and Transplant.

Regina had her transplant today. She was throwing up a lot, but she feels so much better right now. Since we are in isolation, we can not go to playroom, but i got her some crafts to do and she is doing them now. I do not have wireless in our room ( 405 east). I am writing now from waiting room computer. ANyway. REgina is not eating much, but her spirit is coming back and she is finally starting to talk to me. She ignored me for couple of days. We also had 2 special surprise visitors today. ( thank you for coming to see Regina). We will be inpatients for a while.
OK, about reginas counts. I found out today that Reginas counts this morning were 3200 ( anc,) ALL her labs went up, instead of down. Dr Dhall told me that he has no idea why. SO , regina still has some immune system to fight off whatever bugs her.

About transplant- IT was very different from St Jude transplant. Regina got her benadryl, adavan, tylenol.. ANd then 4 bags of stem cells ( IV). In St Jude it was done by DOCTOR, and it was injected directly to REginas line. THis time it was done by nurses and doctor was next to them just writing down all Reginas vital signs. Couple of times she got really shaky, and I got really worried, but after few minutes shaking stopped. Most likely it was due to cold stem cells. :) ANyway, just hope that those cells engage fast and start building stronger immune system for my Miracle:)
Merry Christmas to you all :) thank you for all the well wishes, cards, candy, cakes, wine, toys for kids, glogg, cookies, more cakes and cookies, more candy, and hugs.:) I just hope that next thing you all get me is one good bike so I can bike these extra holiday lbs off. :)lol.

Please send those good appetite vibes to Reginas way. Today she only had one chicken nugget and 6 french fries. She wants to have Ikea meatballs with gravy instead... grrrrr. I wish hospital had IKEA restaurant here instead of McDonalds.

Regina is sick.

Update!!!
Regina is in CHLA now. She was addmitted short while ago. I am not sure for how long she will be in there, but most likely for a while. We will be celebrating our HO, HO, HO time in inpatient, 4th floor, most likely in isolation. I am still at home, since my car has been serviced in MB, laguna niguel.. And they have been ignoring my phonecalls.



Christmas 2005 in Estonia

Regina has been having low grade fever since yesterday, she has herpes outbrakes all over her mouth and lips, she is vomiting and can't keep her food down. She has no energy to do anything. All she wants right now is to lay down and watch TV. She is still drinking- which is excellent. Please hope that her condition does not get worse. My husband is in LA with Regina right now. I am home with my boy Gabe, since he wanted me to see his cute school performance ( BTW, he was yawning the whole time.

Anyway, Plese keep REgina in your thoughts right now. :)

URGENT PRAYERS NEEDED FOR OUR ST JUDE FRIEND.

Our friend Madelyn is loosing her battle with Neuroblastoma stage IV. We met her in St Jude and get to know her and her family a little. They just got the worst possible news- they may have only 2 more weeks with their sweet little Madelyn. I really thought that she is going to beat this horrible disease, and my heart is hurting over this.

Please check out their Caringbridge website.

http://www.caringbridge.org/tn/madelyn/

IV chemo, day 2

Picture taken by Risa.

Regina did really well today . No vomiting, still feeling pretty good. But Reginas cough is getting worse, and she sneezes a lot. To much infact. I never seen her sneeze so much. Maybe she is allergic to chemo ??

One of our special friend Melissa is needing your prayers. Melissa was one of our first roommates in CHLA. She has medulloblastoma ( similar tumor to Regina).
Melissa is not doing very well right now. She found out few weeks ago that WHILE she was on chemo, new tumors started growing in her spine. doctors are running out of options what to do. They want to harvest her stem cells , but since spinal fluids show some cancer cells , they are not sure how successful this harvest will be.

Then one more of our CHLA friend, Grayson - ATRT ( one very agrssive brain tumor) has been fighting hard. Hes counts have been down for 32 days now, and mom and dad are getting very worried about cancer spreading its cells all over his brain. ATRT is very fast growing cancer, and they have every right to be worried sick. I just hope that Graysons counts get back to normal soon, they can have surgery to remove more tumor, send tumor to Belgium, and they can make cancer vaccine to Grayson. :) They have been in CHLA since june also.

Then one more our friend Dylan just took his first steps after recovering from stroke. ( I think he was diagnosed in june also). WOHOO!! He is taking baby steps, but he is back world!!!!

We have not heard from our very special friend Luciana for a long time. I emailed her foster mom while ago, but I have not heard from them. i hope no news are good news.


Please keep your fingers crossed for successful Stem cell transplant. i am already stressed about it. And it shows .. my pants wont button.... and my friends just keep showing up with food...

Regina wishes you HAPPY HOLIDAYS and says thank you for cool cards that you all have been sending us. :)

YAAWWNN

Oh, today was long and very disturbing day. oh, Regina is doing great. She tolerated chemo super well. I had to give her couple of sponge baths, because chemo was coming to surface through her skin and I had to wash it off. No vomiting, her energy level is fine.

Tomorrow will be another 10 hour day.

I do not get it. I do not get those moms who physically abuse their kids. And physical abuse is followed by verbal very disturbing abuse.
This family stays to Ronald McDonald house. I am not sure what kind of illness their kid has, but I know they come to neuro/oncology clinic. anyway, their little son was sitting on stroller. Mom started pushing stroller. Boys foot got caught in the middle of the doubble wheels, and boy was screaming. MOM pulled his feet out, SLAPPED across his face with her hand and yelled at him.. I WISH YOU WERE DEAD, why can't this damn cancer kill you sooner... She was angry mexican. Very large mexican with very large family following her everywhere..
Social worker was called and I had to leave after that because Reginas chemo just arrived and we had to start hydration. I just hope that something horrible happens to her and somebody slaps her across her face , when she is helplessly screaming, chained to her wheelchair ( she is to big for stroller). I just hope that I never ever have to see something like that again. It was very very disturbing sight to see, and I was not only one to witness it.

Kind of slow sunday.

Reginas counts are down. She looks and acts more tired and her sense of smell and taste is stronger than ever. Everything makes her nauseous. Bad Chemo, no candy for you!!!!!!
We had to cancel our plans for today. We had plans to go to Los Angeles Estonian house for a Christmas party. This is second year in row we were not able to go. Last year we had to go to St Jude for scans. This year, due to low counts. Children's christmas party in Estonia house is alway fun. Snacks, kids performing songs and dances, Santa comes and hands out gift for kids... And catching up with old good friends...

BUT our Sunday was not completely wasted. Dancing squirrel Productions came to Ronald Mcdonald house and performed one very fun and entertaining play called Holly and Snowflake adventures. It was amazing. Costumes, acting, stage that they brought with them... FUN!!!!!
If you go to my http://www.caliwitch.smugmug.com album , you can find some pics from that play.

Anyway, please keep your fingers crossed for tomorrow. Tomorrow and tuesday will be tough days. Regina will receive IV chemo, that can do damage to her skin. We also have to remove her IV dressing for few days, because if we do not , Reginas skin could just peel off

Fun Saturday.:-)

Regina has 2 more days left to take oral chemo.. Monday, tuesday IV chemo. Wednesday, thursday - rest days--- and Friday stem cell infusion day.

But we had fun saturday. While ago we received party invitation from Dr Loudon and Dr Muhonen to their annual Children's Hospital of Orange county Neurosurgery Patient holiday party. So , around 10,30 we drove from los angeles to Orange county. It was such a fun party. Santa and elves ( dr Loudon was one TALL elf), and food and drinks , and presents and crafts. I LOVED the friendly feeling on that party. It was nice seeing some of the nurses who took care of Regina , and volunteers. I do not know why it is but Orange county volunteers and child life people are so much nicer than CHLA ones, we have couple of CHLA favorites, but nothing compares to CHOC. Dr Loudon and Muhonen were glad to see Regina and were happy that she is doing so great :)
Regina chose for her gift Moonsand, and Gabriel chose Cars Lego set. For me, I got bag full of lotions , soaps and sanitizers:)

We also had a nice surprise waiting for us there. If you remember, while ago, after Regina was diagnosed, we had a fun Princess Tee Party for her. It was perfect party. With all the glamour. We found our very favorite Tee party planner Risa doing Face paintings for CHOC kids. She is amazing with whatever she does. Seriously. She is very talented girl. Regina wanted to have snowflakes across her forehead and she got them :)

I also forgot to mention that LA Ronald McDonald house looks amazing during this time of year. HUGE christmas tree , decorations everywhere, chirstmas music, volunteers and groups coming in to do some arts and crafts... Fun:) Everybody is just so happy and merry.. WHy can't people be like this all year along.


( PS.. I can not add any photos.. wireless here in RMDH is slow and because of that it takes forever to upload pics)

Thank you :)

December 2005 in estonia with Grandparents...

December 2003

I want to thank you all for your continuous support. Last night I had a nice surprise. We came home for a night , and about 20 minutes later doorbell ringed. One of our good friends stepped by to wish us merry Christmas and they brought us great homemade gifts ( glogg, saffron pastry, and very tasty cake) . That was JUST what I needed.

I also want to thank you all for Christmas cards. I am sorry If I forgot to mail you one, but know, that we are thinking about you all, J

Regina is doing ok right now. She was doing great until we added other chemo drug. ( temodor ). Today she woke up and complained pain on her leg and she looked very bloated. She is also loosing her appetite and energy level is tiny bit down. Anyway, there are lots of sick people out there right now … and I just hope that she does not get anything funky. Lol

NICK is coming home on Sunday JJJJ He was away for a week and oh boy… I need him home . It is way to hard to juggle between hospital and school. Gabriel had to miss Thursday in school because we had to drive to LA. And then on Thursday night we came home because he has to be is school and then we are driving back to CHLA tonight and stay for a while. Anyway,,, gas cards are appreciated…lol And because all of this driving , my back is not what it used to be. Even though I have great chiropractor, my back is not fully responding to his adjustments. I feel great for 3 days and then suddenly I get huge amount of pressure in my neck/head and lower back. Very weird kind of pressure. I never had this before. I always had back issues, but this time around it is worse than ever. I think I need deep tissue massage…

Regina is still into Hannah Montana and high school musical stuff. BUT… I am very bad mom and I am not getting her any Hannah Montana stuff… I leave that to my friends ;) lol I did get her what she really wanted and she has been asking for it forever…. We got her iPod Nano. That nano is tiny. It is almost invisible… But wow, I like its sound quality much better than my old I pods…SSHHH.. Regina does not know that she will be getting it so do not tell her…;)

I hope you guys are having great holiday season.

REgina Dancing....

Quality of this video is little crappy since I took it with my digital camera. But here it is...

:)

Regina is doing awesome :) She is so awesome. She has been on oral etoposide ( chemo) .. horrible tasting liquid chemo drug since friday. She is doing really well. She has not vomited once. Today, while I was listening Cascada ( euro dance ), she was giving us dance show for about 20 minutes. She was sweating after her dance session. lol. All gabriel was doing,was running around in his underwear and shaking his cutie booty.... lol He is funny.. He still thinks that he is going to merry me... lol..

Anyway, on wednesday we have to add Temador.( more oral chemo) , this time she has to take 4 pills, instead of 2. I see little problem here. She can handle couple of chemo pills, but 4 is way to much. But we'll see. She always surprises me with her strength and determination.:)

Today we had to go to chla for hearing testing. NO surprises there. She has high frequency hearing loss. ( severe, that is what I was told, BUT, it is not severe enough to get her hearing aids. it is BORDERLINE... Anyway we just hope that it stays this way and does not get worse.

Regina will go to school tomorrow ( tuesday) and day after that. And then we have to check into RMDH in LA. So if you are i LA area and you are healthy, step by. We are most likely bored out of our minds.... This time we got request sent in for 6 weeks, but we'll see. The moment he counts come back out , we are out of there. ...


Now, You know. I was really worried about Regina missing school a lot. I was really good teachin her at home... I still make sure she reads at least 30 minutes per day... BUT, since I spend so much time in LA area, I really think that Regina will do JUST fine , IF she does not go to school rest of her life.....lol
OK. I have really fun story for you all. The other day someone asked me- WHERE ARE YOU FROM??? I told them I am from Estonia ( I do not like playing guessing games,,,, I just tell them right away, I think guessing games are stupid). Anyway.. Guess what HIS next question was???? Anyone?????? Oh you people... GUESS already!!!

OK. His question was... WHICH STATE IS THAT? My answer was--- It is nice state next to Finland.... lol ( which is true), but I am sure this is not the answer he wanted to hear...

One of my friends told me... How do I get myself into this kind of situations, and meet people like THAT// Honestly? I do not know. it just happens to me. And I kind of like it.;)


AND LAST, But NOT LEAST-- WE GOT PERFECT CHRISTMAS TREE!!! It is beautiful and expensive and it smells wonderful in our house :)

And it has started.

REgina scared me a little today. While we were eating lunch in CHLA , she told me her head is shaky again( thats how she felt before she relapsed). But I think this shaky head was due to spinal tap she had yesterday... She is fine now.

We saw Reginad Dr today. And he is not wasting any time. lol
Regina started her chemo today. she is on Oral etoposide for 10 days ( 40mg day). THis time it is liquid form and it tastes discusting . NO I did not taste it, I was told it tastes discusting).
10 days oral etoposida.
on Day 6 we add Temodar. She has to take temodar for 5 days. . Then on 17th and 18th of december she has IV chemo Thiotepa. Thiotepa is really toxic. It is so toxic that Regina can not have ANY tape on her body. She has her central line dressed with tape. WHILE on thiotepa we have to remove ALL TAPE, bandages etc because if we dont, her skin will peel off... Then she has 2 days brake (19/20 dec). And on 21st she will get her first round of Stem cells back. Dear friends. That means. Reginas Immune system will be DOWN DOWN DOWN and most likely we have to stay Away from all of you...:( She will start Gcsf ( immune system booster on 22nd of december and we are hoping that her ANC will be back by 31st of december.. If not, we may end up spening our new years eve in CHLA.

It is all very very exhausting and time to time I walk around in a bubble, not noticing that someone is calling my name, or telling me something. Please forgive me.. I am just tired .
I am so glad that Gabriel is such a great easy going kid. It warms my heart when Mrs Miller says something good about him. I really do not spend lot of time with him, teaching him, takinkg care of him. He is doing everything by himself . He is such an amazing kid and always knows how to make us laugh with his silly and sick sense of humor.( kind of like mine). I hope he does not grow up to be serial killer ( srry, I heard that kids who have tough childhood, and boys who do not feel loved by mothers end up being psychos.... ) . lol...

Take care and have fun holiday season.

More Good news:)

Looks like we will be In Ronal McDonald house during the Christmas:)
Reginas case was approved..... We are starting chemo tomorrow. But we will be home until Wednesday. On Wednesday we will check into Ronald McDonald house and try to survive upcoming few weeks.:)

Merry Christmas:)

Official Update.

YES, YES, YES!!!!!! Regina is truly one amazing 8 year old. A M A Z I N G !!! And Dr Dhall is miracle doctor ( well, his team also... ;) )

Believe me or not, but MRI scans DID NOT pick up any cancer cells. IT did pick up something, but it surely is not acting like PNET. Dr Dhall believes it could be from Radiation therapy ( there is also some changes in brain stem but those were present before). Dr Dhall told us not to be way to exited about it since IT is very hard to tell WHAT is surrounding that area . It could be cancerous, it could be completely benign. Without surgery it is impossible to tell. BUT Regina can not have surgery on that area since it is part of brain and cutting it would be not the best idea.

So now we have few things left to do. I asked Dr Dhall what would happen if we quit now. He told us ( and we believe him. He told us that long term survival would be out of question. To give REgina chance in life, WE HAVE TO have STEM cell transplant with pretty high dose of chemo ( temodor, etoposide and Thiotepa). This would most possibly kill rest of remaining "cancer" cells there are left ( hiding).
But now we have another huge issue. Our insurance company WILL not want to cover Reginas treatment because of BOARD of MEDICAL ADVISORS ARE MORONS!!!!! YES. This time I mean it. I am not jokingly telling it. They are fat ass morons.!!!

IT IS MEDICAL NECESSITY. There are few papers published about relapses and MUCH NEEDED STEM CELL TRANSPLANTS. Dr Dhall and Finlay are doing everything they can. And they told me what kind of trouble they have gone through to get Reginas treatment covered. But Board of Morons, who have NO IDEA and have no EXPERIENCE and who have NEVER done stem cell transplants are denying lifesaving procedure...

This is what they say....

OUR Peer Clinical Reviewer JOHN GOLDENRING , MD has determined: The request for tandem stem cell transplant to treat a Primitive Neuroectodermal tumor ( PNET cannot be authorized at this time because it is considered experimental. The blue cross of California medical Policy to High dose Chemotherapy with Hematopoietic Stem Cell Transplantation for pediatric Solid Tumors, which is based on published peer- reviewed evidence based medical literature, was utilized in making this determination. This case was sent for matched , independent specialty review by an expert who is not associated with blue cross of California, and that reviewer confirmed that this treatment is still investigational and should only be done in the setting of an appropriate clinical trial.....

OK. Now, I am going to email Dr dhall and ask if we could do this somewhere like IN ST JUDE ????

ANYWAY.. JUST HOPE THAT Things get worked out :)

It has been really stressful week...

IN CHLA Healing Garden.

Right now I just want to let it out. I understand life in CHLA is stressful. But I do not agree name calling. Today happened something I thought only happens in Jerry Springer. Today , while we were checking in to CHLA, before us was one mom with a kid. Kid was adorable. Suddenly that kid started coughing out loud. Lot of coughing. LOT. I told Regina to stay next to me because we are not sure why that baby was coughing. ANd hell happened.
Mom flipped out... She started yelling at me.. YOU are stupid, she has asthma, you people always assume, ask first , stupid people... ( meaning WHITE people). I tried to talk to her, but she did not even let me say a word. It continued until we got to hemo/onco floor ( very painful 5 minutes). She was walking and yabbing, and yelling and talking. I told her, I am sorry lady. I do not have time for questions when it comes to sick kids. Your daughter was caughing AND my first respond was to PROTECT my daughter from germs. Now that I know, I am sorry about what happened. ...
It did not stop there. She kept going on and on and on and on.... ... Finally we reached clinic. AS I was walking to get Regina she said out loud BITCH( and few other ones). I froze for a moment. Clinic was full of people and they all heard. I walked back to her and told her.. I AM sorry , but you do not need to call me names. She looked at me and told me... Where is your daughters mask... LOOK , SHE IS COUGHING. ( well, regina was feeling nauseous because of somebody was wearing really strong perfum, and she WAS NOT COUGHING). AND she kept insulting me again and again and again.. Luckily CHLA reception girls stepped in and took good care of me. They asked me to wait until air is clear and then let me and Regina to go to get her antibiotics. It was really frightening for me. I tried to stay calm, but I just had one of the worst panic attacks I have had in years.. I was crying so hard It was hard to breath. My nose and face was getting numb... But after few hugs and calming words from other CHLA moms I felt better again... But then Dr Dhall entered and asked what's wrong and I started crying again.... and told him what has happened...


IT is all way to much stress to deal with and I guess I just needed to let it out... BUT GOOD news about Reginas MRI but a smile to my face and it is still there :)

..

Unofficial news--- GOOD NEWS. Everything is stable. More info tomorrow...
PS.. Regina has lumbar puncture tomorrow 7 o'clock. We have to be in CHLA 6AM.

UH OH>

Regina and dude from Mister Magorium wonder emporium...
I left 9.30 this morning to drive to LA. I finally got home 11 PM. It was heck of a day. Well, it was heck of a night. 3 hours in MRI room. from 7 to 10. LOOONG 3 hours. MRI technician told me that she would love to tell me how Reginas MRI was, but sadly she does not want to scare me since, she does not have access to previous MRIs, and since there is something still present, ( tumor) she does not know if it has grown or shrank. Anyway, Dr Dhall told me that he will let me know tomorrow ( tuesday) what is going on.
I am so worried. I truly am. I can't handle bad news.. I can't handle good news eather... Because good news is sugarcoated bad news... if you know what I mean. It is 11.21 pm and I just opened bottle of wine

We are home...

Our Roommate Luciana:)

REGINA DANCING ON HER BED( IN CHLA)

YOU have no IDEA how good it feels to be home. Our Neighborhood looks beautiful. Lot of houses have christmas decorations up and it is nice and quiet here. :) I love being home. Regina was also exited to come home... ALTHOUGH... when Dr Finlay asked- REGINA are you ready to go home. OR if you want you can hang out here little longer..( he was joking of course).. GUESS what Regina told him-- I WANT TO STAY HERE and watch TV. lol She is funny.

We baked some cookies and brownies and we are going to take them to outpatient nurses tomorrow. We have to stay to LA for WHOLE DAY. REgina has IV antibiotics due 11am. THEN we have nothing to do until 4 PM. And 4.30 we have to be check in for MRI. This time it is LONG MRI. BRAIN -40 minutes and spine 40 minutes. So, They are going to sedate her a little because I do not think that she can stay still for such a long time.

Shivers, shivers, shivers... keep your fingers crossed for good results. DR Finlay thinks that Regina is doing awesome. He is not sure what to call Reginas condidion- Miracle or something else, but he is impressed. Lets just hope that miracle continues to happen .... :)

:)

Regina is full of energy, and we are stuck here in CHLA. Mommy Diana has one of the worst headaches I have had for a while. vuih....

We saw dr Finlay today. All of us are waiting Reginas Monday night MRI. All I want is cleaner clearer brain..

Dr Finlay also told us that Insurance company still does not want to approve Reginas upcoming procedures ( stem cell transplant IN CASE SHE needs it). He told me that within past 10 years NO insurance company has EVER denied anything he has asked for and he is hopeful that with MEDIA help ( lol,, insurance companies hate those things ) we will get some things moving....

Our Roommate Luciana is out. last night one person from Agency came over and took her home. We fell in love with her. She was such a great kid. BEfore she left i gave her little gift. Just some clothes and Bratz pajamas,( she loves bratz). You should have seen expression on her face... THIS IS FOR ME, YOU DID IT FOR ME. She was dancing around and proudly showing her new clothes to everybody. When nurses told her that she can come home today. She came to me and asked if she can go home with me. I told her that her " mom " will be very sad if something like that happened. Luci told me- NO, my " mom" would be like- PLEASE take Luci with you. PLEASE!!!
Oh, that just broke my heart. .. Get well luci, and I hope you never have to come back to CHLA again .

Now, we get out tomorrow. ( sunday). We will go and BUY biggest christmas tree we can afford . lol And then decorate it and then clean our house and just hang out.
I hope you guys are having great time shopping for christmas, Drinking gingerbread lattes, and gossiping what, who and where.....
All I really want for christmas is more good news, Hope for year 2008, sour kraut, black pudding and lots and lots of Glogg..

What's on your Christmas list ???

I hope her foster family takes good care of her. They seem very nice people :)