Monday... Blue , blue monday. Tears , few tears here and there.
I start with REgina. She slept most of yesterday, and most of today. OR she pretended sleep so nobody could bother her. I had hospice nurse visit yesterday to check her out, because I was very worried about her. I also called hospice nurse today and C. Came to visit REgina. Regina had her first meal today:) She woke up and after LOOOONG convincing speach she finally agreed to go to bathroom and eat something... SO Nick hurried to CHILIS and got her pizza :) During waiting period Regina told me that she wants to have Birthday party , and she wants to have at least 20 people at her party. SO on Wednesday Morning we are having little birthday breakfast for her. It is her wish, and it is my job to grant it. Nothing big. Just quiet sitting. Most likely she will be sleeping the whole time, but I will be at peace knowing I made her wish come true
I ALSO went to O Connor Mortuary today. Those f....salespeople. Seriously. They so wanted to take advantage of me today. Thank god I had my Friend J with me, so she could witness the whole thing...
Anyway. On Fairhaven Mortuary they offered me 50% child discount. So price was good .. I liked it, but Fairhaven is far from our house...
SO , In O connor they pulled out price list, and that DUDE with soft , valming voice started writing me up, and telling me , ok, lets fill out some information and let's get this "party" started.... I was like WOW... Listen, Don't you guys have child discount. This almost 5000 dollar fee is way to high, and um, if it is so high, I don't think I will choose you... So guy says. No , I don't think so. Under 3 year old we have discounts but she is almost 10... I was like ok....
So he says.. WAIT, I will be right back. He disappears and comes back with PRICE LIST for kids under 3 and kids under 12. AND sure enough, they had a 50% off for kids under 12... HA.. IF I would have not asked about discount, he would have charged me full price, plus more.. Talk about taking advantage .... ALso.. HE commented about... SEems like I have been doing my research.....
In end I did sign contract with them. and got referral to visit Saddleback church in Lake FOrrest. Julee, and I knew that this place was right for service. SO most likely we will use tent 2 that fits about 500 people.
http://saddlebackfamily.com/site/provider/siteprovider/saddlebackfamily.com/templates/servicetimesanddirections/campusmap.pdf Sue, who gave us a tour of facilyty, was very nice and cheefrul and helpful. Eventhough I only spoke to her about 5 minutes I felt very welcome . I feel good about things I have acomplished but I feel sad about things that wait ahead.

:(:(:(

Reginas Hospital Picture

Today has been longest and SADEST day for me. Regina slept whole day.. ALmost. She woke up 6 am, and complained headache right away. I gave her decadron, tylenol . Hour later she was still asking me to take her to hospital. I called hospice nurse, and she told me to give Regina morphine. I gave it to her. hour later she was crying and complaining more pain. ... It took 3 hours for hospice nurse to show up-- well, it is church day, and 2 OTHER patients got sick... so.. AND we have to wait for 3 hours . ANyway, she gave REgina more morphine and we ordered refils for morphine and decadron. It worked finally, and she has been waking up only for seconds at a time. I am really sad...

Past 2 days I have been trying to create photo slide show for her funeral service. I have way to many good pictures of her and feel like the whole service will be loooong slideshow.. SO yeah.. hehe.
I also have been thinking about who I want to say something in Reginas funeral... I also want it to be "happier" event color vice... NO black please, OR black combined with happy colors is ok. OR EVEN BETTEr, mismached clothes, JUST THE WAY REGINA LOVED IT :) I never told her what to wear or how to wear it. IF I chose clothes to her and she did not like MATCHED clothes, she went back to her closet and dressed herself HER WAY:) hehe She is free spirit she knows what she wants, how she wants it and when she makes it happen.... Respect Regina :)

.. I KNOW I SHOULD NOT write about it, but it is like talking out loud to all of you once, instead of one person after another....

Gabriel-- He is sweetheart :) He has been trying so hard to make Regina smile and laugh today. She even got punished for it :( srry gabriel.... When Regina did not wake up for lunch and dinner today, Gabriel suggested that he goes upstairs and makes some silly faces for REgina and does some crazy bootydance, maybe then REgina wakes up and laughs, and eats her lunch and dinner... / Gabriel really does care about Regina a lot and that what hurts the most. I don't know what will happen later. I have no idea.

I also ordered REginas cremation urn today.... It is beautiful stone urn. I added custom Engraving Reginas name and years....
http://www.funeral-urn.com/handmade-stone-urn-heart.aspx

Longer , sadder days ahead.

PS... all of you have been so nice and caring and chreerful and thoughtful. I know you all want to help. Please do so :) Do it the way you want. Do it the way YOU know how to help. If you feel like it come in and bring some healthy food, if you want, you can come in and clean my kitchen , or living room, or bedroom. If you want , you can step by and just say HI and give us a hug ...:)
PLEASE DON't bring sweets , or cookies, or cakes. Regina has stopped eating, and we don't want to waste any food. If you care about our heart , send fruits, vegetables, something practical , giftcards,books, magazines, or cash/checks.

FUn day...

REginas day started out little rough... She woke up 6 am. and took her first nap 9 AM. Her eyes are getting tired really fast now. .
Around 10 AM hospice nurse came in and took a look at REgina. Reginas heart sounds fine, lungs sound fine , no fever... ... I also expressed my worries about One moment she is doing great and then suddenly she is down and then good again and then down again... ANd sometimes it feels like omg , maybe it is last nap she takes... Nurse told me that Regina will give us more warning signs . USUALLY kids do, braintumor kids do.... Breathing issues mostly.. and more....

We had few FUN FUN FUN visitors today :) Diane and her cute dog that liked to Lick REGINA AND ME came by around 11 am. Regina enjoyed it :) It was nice to chit chat... Then Risa and her fun suitcase full of clitter and clue showed up.. OH, and Cupcakes.... AND THAT WAS SUPER FUN:) REgina got all glittery :) It was so cute to see her just relaxed, and Risa doing what she is doing best... Entertaining... Seriously, I think this woman has 101 jobs. So talented :)
Then Reginas former classmate and her mom came by to say hi :) They brough some great goodies for me( YES, FOR ME ;) ).
. And something that but really big smile on Reginas face - Webkinz ....
Regina did lot of smiling today :) BUT all this smiling made her really tired and around 4 PM she was upstairs in our bed and pretending to sleep. She finally fell asleep around 7 pm.
I wonder what tomorrow brings ...

Again.. I want to thank you and hug you for all good you have done for us... I do want to send each one of you THANK YOU NOTE, but I have no energy for it. I have not even sent out birthday card to my family in estonia, or taken care of my Goddaughters.. or friends... it is very very hard ot stay sane. It is so much easier to let go and just close myself up and not communicate, but I feel like this is my only way to stay "healhty"... SO thank you for taking my crap, and adding your crap ... Love this crappy world...

Every day is different

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Every day is emotionally different for me. For Her, for us. Today was especially hard for me and I don't know why.
Day started out fine. Regina woke up six and did some playing. But she gets tired very easily now. Even eating makes her tired. :( Then I went to do some running, but I am physically so exhausted I only could run a mile.... When I got home and did my stretching doorbell rang... FOR my surprise, we got a great fruitbasket from Edible arrangements . We really are thankful for sender :) FRUIT IS GOOD:)

Around 2 o'clock doorbell rang again... This time it was scheduled surprise. I did not even tell Regina:) BECAUSE I KNEW she would say no, but she loves dogs so I kept it a secret... I want to thank Pru for making this happen :)-+
Besides that I received and made more phone calls... Fairhaven Mortuary gave us phone number to contact The Unforgettables foundation-http://www.theunforgettables.com/
That help out with funeral expenses IF we qualify... They also gave me referral to O'Connor mortuary that is very close to us. THey said that Fairhaven is great mortuary, but O'connor is equally as good.. Now only thing I have to check is prices. Even though O'Connor might be closer, but if it is more expensive then most likely we will not choose it. I am going to visit them on Monday morning around 11 AM ..
Yesterday I also called Chaplain Brad Stetson ( fairhaven recommended him). He is coming to visit us on Tuesday morning. Before I was sure we are going to use Fairhaven, now I am in between.. If I like O Connor better, and their prices are about the same, then I try to get things moving with them...

I also had emotional breakdown today.. Well, small things like MEDICAL bills are still driving me insane. let just say.. to receive almost 2000 dollar medical bill from Choc ( january/february intensive care co pays or whatever).. I just started crying on phone. Told the person on other line that I AM NOT ready to discuss it right now and hang up. I told her that Do I really have to deal with it right now, and she told me..-- I don't want this bill to go to collection agency... FUCK... I try to call insurance tomorrow and check what is going on ( I hate it thought), because we have met our deductibles.. .

SO TIRED. SO SO SO TIRED... OH... and My baby BOY Gabriel got his chicken box vaccine today... He acted like it was end of the world....

:)

Regina had another alright day. Same morning routine. But she slept all throughout today more than other days. She is still pain free, and was in very good spirits. We visited CHOC today. Yes, labs. Her labs looked pretty good. Platelets were about 63 000 , so we are good :). SHe remained happy and even joked a little with nurses :) Good girl :) On our way home she stayed awake. usually she falls asleep after labs, but she stayed awake this time :)
Tomorrow nothing special planned. I called Hospice and asked when are they coming over and instead of tomorrow they are coming on friday . OK. sure. Friday will be full of visitors. I LIKE IT :)

Gabriel is doing good. Today he was trying to make Regina laugh with his silly jokes and acts. DON'T ask me what he did. I will not tell you. ;)

:)

We had lot of visitors today :) IT was great morning for Regina:) lot of smiles, laughter, jokes :) Right now she is napping :)
Thank you for your support and kind words and notes and cards and gifts :)

Picture uploader does not work :( Photos later.

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Today was pretty ordinary day for us-- NOT.
Well, it started fine, REgina woke up 7 again, ate, played her games and watched tv. Around 10 am trinity Hospice care "art girl" came to visit us and we did one cute art project- Well, she helped us to do our handprints, and I am making it look like a tree right now :) When we are finished I will post pictures..

Around 12.40 My Friend J. Picked me up and we went "shopping". I wisited Fairhaven Mortuary. Had a talk with Brad about what can be done and what are our options and then he gave us a tour. Showd us their chapel that fits about 200 people, tour of cemetery, blablahblah., how costly everything will be ( Total about 4000 dollars).... After that J. and I decided to look into El Toro Memorial park . The moment I entered this PARK, I knew....


And around 6PM friends visited :)( Regina is pretty tired here , after they left she fell asleep right away, but before she did fall asleep she told me she told me that she loves me as much as big is universe :) That was our day:)

Regina is doing alright :)

Weekend

Regina had pretty stable weekend:) Still same routine. Wake up, webkinz, breakfast, tv, lunch, nap, dinner. and Around 6 pm bedtime:) She wakes up around 7 AM every morning now.
She is drooling lot more and her speech is getting worse and worse :)

I want to thank you for all of you for your support and kind words. I am sure if words, and thoughts and worries worked, she'd be healed by now.
It is very hard to see her like this. She still smiles and simplest things make her smile:) She is amazing fighter and at times I wish I was as strong as she was.:)

I also want to thank you those who decided that they are strong enough to visit her and came by to lift her spirits :) We are very thankful for people like you and hope to hear from you soon again:)

Friday.

Regina had a ok day today :) She played webkinz, ate some Chilis and watched tv. She really does not want to do much. She is very easy to please. As long as she has her milk cup close to her, remote close by she is fine.:)
Today while I carried her upstairs, I started counting stairs in Estonian- Yks, kaks, kolm , neli, viis, kuus , seitse, kaheksa, yheksa , kymme-- SHE REMEMBERED .. SHe started counting with me :):) And she smiled while she did it.. AH, small things...
We also had some great visitors. First, we had Hospice nurse and Dr.Glen visiting. Seems like they know what they are doing and Dr. Glen seems to know what he is talking about. He has a special "glow" about him. Good kind of glow.
Also Mrs. Fine ( Principle of LNES) visited Regina today and brought her favorite treets in a green can :) Like I sayed, Regina is easy to please :).

On Monday we have volunteer to come in and do some "family Tree art project" with us and after that I will go to Fairhaven Mortuary to get things rollin... Nick stays home with kids... not sure How well I handle that step....

other than that nothing much. Just staying home and hanging out here. :)

Tuesday/wednesday happenings.

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Tuesday *8/18* started like any ordinary day. REgina woke up early,took her meds, had breakfast and played computer. Around 11 she wanted to nap. She was feeling good when she laid down for a nap. Myself I made movie plans and went to see Time travellers wife- Loved it. Since there was no reception in movie theater I DID NOT get any messages or text. I don't get it. Julee , seemed to have it, but I did not.. Crap. ANyway.. As I stepped out of theater I heard text message notice... I hurried home and things were pretty crazy. Regina was throwing up, headaches, sleeping, not responding , moaning... Nick crying.... We thought end is near.. We called hospice care and told them what was going on. We put Regina back on steroids... hour later her headaches stopped but she was still sleeping. Around 5 PM she woke up and requested Chilis cheese pizza with french fries:) She did pretty good eating her pizza. SHE has not thrown up since yesterday :) It is still 11 Am, so I am not sure how tonight will look, but yestarday was one big bad nightmare....(Regina treating us with sweet smile after very hard day )

Today Regina has beed good. Her speech is MUCH worse , very blurred and hard to understand, and she is drooling lot more.. Seems like tumors keep growing in pretty fast rate :( Luckily she is not in pain anymore. If pain comes we got some good meds to give her, Hope they take care of her problems.

CANCER SUCKS. Brain tumors suck. It is emotionaly very hard to deal with this kind of situation because one moment she is "about to let go", and then suddenly she is GREAT again, and then worse and then better again. . It is very very very very hard not knowing what happens next. Very confusing.
Keep Regina in your thoughs :)
ps. Thank you Malloy family for dropping by late last night and letting us know you care :) Care package was very much needed.... :)

Regina:)

Regina had couple of pretty good days. Yesterday , as we were supposed to go to a playdate, SHE FELL ASLEEP.
She also had couple of bathroom accidents.. she was playing computer and just forgot about it :(
Other than that she is still doing good :) Pretty happy, ( as long as we do what she tells us what to do ...), eats like crazy , so what she is only 1mg of steroids per day. Plays 4-5 hours of computer per days taking care of her webkins:) plays DS and makes us laugh with her sudden BOOOOOOHHHH yells :) and everything makes her laugh. Silly faces, silly brother, funny looking foods, when I tickle her neck...
She is such a luvbug right now :):):) The other day she even tryed to dance ( with her upper body ) :):)

:D

Thank you so much for your kind words and prayers and good thoughts and vibes, and emails and phonecalls and everything else you guys have done. I am sorry that I have not returned all emales and calles , but honestly I just don't have anything else to say. Regina is stable, STILL . SHe is not doing worse, she is not doing better. Still same cute young REgina :)
SInce we have weaned her off steroids she is also eating less, but STILL A LOT :) SHE demands me to bake her foods every day.. AND GUESS, who has to taste everything gazillion times to make sure it tastes right ??? MEEEEE... hehe.. Love my job ;)

We are so fortunate to have so many good people around us caring about REgina :) I know most of you want to help more, but afraid give me a call or drop a note. DOn't be :) If you want to help then drop by and say HI:) Just for few minutes :) I really hate phones I DO . I can't stand phones and small talk. it just drives me grazy.. I LOVE people, but not talking to them on my cell.... srry guys. :( So if you want to contact me text me (949) 290 6958

We had hospice care ( Trinity Kids Hospice care) Only pediatric hospice care center in OC and LA area. LOVE THEM. We haven't signed any papers yet, but next week I will give them phonecall and get things started.

I also cancelled ( AND people helped me cance) whole bunch of appointments- physical therapy, audiology... endocronology, blood draws 3 times a week. SInce REginas labs were PERFECT on tuesday, I want little break from it. So we are going back to CHOC on thursday:).

Also.. Please recommend good CHILD friendly hotels in OC and LA area with POOL, or things for kids to do. I told Nick that we should go to hotel ( since kids LOVE hotels ) and spend a night there. Get a manicure with Regina, pedicure... you know, simple things...

:(:(:(:(:(:(

(Barbara Britt, Dr. Dhall and REgina)

YOu know how much I want to post whole page of happyfaces and tell you that everything will be ok again. But sadly, third times since 2004 I have to tell you - News that we got today were worst possible news again . Dr Dhall tryed to be positive and tell us that maybe..... But we saw THE SCAN. UGLY. UGLY . UGLY. UGLY.
You have no idea how much I hate cancer , how much I have hated it all thse years. How much I hate that SINGLE CELL that started multiplying ... and turned into... SPNET.

If you ask about HOW much time we have with her- then you know the answer- WE HAVE NO IDEA. We take one day at a time and try to make the best of it.
AHHH. I don't feel like writing anymore. We apreciate your good thoughts , Prayers, EVERYTHING YOU GUYS DO :) We love you for being here for us. :)

I got few WHAT CAN WE DO FOR YOU questions. -- Please don't be afraid to contact us, or ask questions, or step by once in a while :) We love guests, AND PLEASE TAKE BOTTLE OF WINE OR VODKA WITH YOU ;) hint, hint hehehe....
But really, please don't send soft toys or blankets- we have one way to many :( If you really want to help , then instead of buying a toy, send us a check that can cover medical bills( to Diana or Nick Tan) ( YES< OUT of network bills still need to be paid ).

Barbara Britt will make some phonecalls and help us set up hospice/pallative care meeting.