GABRIEL AND NICK

Friday..

We are still inpatients. Regina has no fever, but we are still in because doctors want her counts do recover before they discharge us.

Regina is doing good. She gets really crumpy after she gets benadryl. She gets sleepy and irritable and moody. And wants nobody to talk to her.

Gabriel is doing great also. He adjusted to this little apartment really well. He really does not care where he is at. Just like his mommy ;)

I mentioned yesterday that I will go do some shopping today. We went to local Oak Court mall. It is a small mall . I went there around 8. Mall seemed really empty. But then I went to Macys and it was packed with people. I got some new clothes for kids. Clothes that where onsale really did not appeal to me that much , so I ended up spending some dough for good clothes.

i am so tired now.

Friday has not started yet, but I allready feel tired when I think about my shopping day tomorrow. Yes, I left My DH to hospital overnight and me, sija and Gabriel will wake up early and head to the stores. I hate crowds, but Sija is really exited about all the sales going on tomorrow.

After we left RMH today I felt suddenly hungry- can you belive it? I ate like a pig, but I felt hungry. H U N G R Y. So I went to Target house and I ate the whole 9 inch pumpkin/pecan pie I baked yesterday- IT was heavenly. It was soo good I just could not stop. After I finished eating, I started feeling really fulll. TOOO FULLLLLL. I was about to throw up. But now I am hungry again, and I have no pies to eat- I just feel like eating pies today. lol.

Regina is still not eating anything and her counts remine zero. I want her counts to recover so she can start feeling better . She has one more round chemo left! Yes for Regina!! She is such a little fighter. And smart fighter. With every round of chemo she gets smarter. She knows all the names of meds, she knows what makes her throw up, she knows what nurses do with meds ( crush them up and mix it with cherry cyrup she hates, ) , she knows that benadryl makes her extremely sleepy and vincrystine makes her throw up so does cyclo.... something.
She knows that one day she will be completely cured and she is looking forward to that day. :)

We know the reason..;.

why Regina has fevers. Today doctor told us that finally they found a reason. She has viral infection. Nothing that she got from outside. IT is something we all have in us. But since her immune system is so week, she even can not fight the little viral bugs that are natural parts of our body. Now doctors are preventing her infection to get worse. She is on 2 different antibiotics. THey are trying to wean her off from vancomysin( very storng and powerful antibiotic).

Me , Sija and Gabriel went to Ronald McDonalh house for lunch. It was big but really tasty mistake. I ate 5 pieces of different pies, and turky and ham and everything else I have been wanting to eat all year long, but did not. Starting from tomorrow I have to go back to my normal , healthy balanced diet. ( with no extra sweets and calories. )

Regina seems doing ok in the hospital. We are trying to find her activities to do and she is ok with whatever we give it to her. :)

Happy Turkey Day! :D

Thank you!!!

A Thanksgiving Prayer
T
hank you Father for the blessings you've given this day.
H
elp us to remember, Thou has shown us the way.
A
nd give us strength to help those in need.
N
ever letting us forget, Thy merciful deeds.
K
eep us in Thy tender loving care.
S
ave us, O Lord, when we are in despair!
G
ive us grace as we walk through life.
I
nspire us to seek our brothers amid the strife.
V
ictory in Thee will be our guiding star.
I
n courage we march not caring how far.
N
ow we ask for the most important thing.
G
rant us salvation to escape death's sting.
Copyright by Jim Smith

How to observe Thanksgiving.
Count your blessings instead of your crosses;
Count your gains instead of your losses
.Count your joys instead of your woes;
Count your friends instead of your foes.
Count your smiles instead of your tears;
Count your courage instead of your fears.
Count your full years instead of your lean;
Count your kind deeds instead of your mean.
Count your health instead of your wealth;
Count on God instead of yourself.
~~Author Unknown.~~

Fever, no fever, fever...

Last night around 4, Regina wanted to go to potty. I carried her to bathroom. She felt really hot, so I called nurse and told her to take Reginas temp. She had 38,8 fever. She got some tylenol and fever went down. Today has been fever free.
Sija Regina and Gabriel are in the hospital now. Regina acts like a boss there. Do this, dont do that, you have to color this way. Poor Gabriel. lol

Yesterday when I picked Nick and Gabriel up from Airport, gabriel ran to me. Oh, boy , was I happy to see him. He has grown a little. And he is cute as ever. And the best of all, he has really good manners. Nick really work on that. :)

Still in ...

Regina had light fever this morning 37,8. So we will be on the fourth floor at least next 48 hours( probably our thanksgiving dinner will be betweek those 4 walls). I was looking forward cooking this year, but there is always next year. :)

All her cultures came back neg. SO we relly don't know what causes the fever. They took samples from her line and let it sit for 48 hours, to see if something grows ( bacteria). Hopefully not. And we just hope that the fever is caused by G shots and bonemarrow trying to engage in Reginas bones. :D

Today she feels pretty good. She is slowly starting to reveal more about herself to the nurses and doctors. Most of the nurses know her pretty well , and they know what kind of questions to ask, to make Regina open up. :)
Regina is doin a lot of crafts in the hospital. Childe life volunteers have trouble to come up with new things, since she has done every single craft twice. And she refuses to do it third time. :lol Poor volunteers. lol

3 more hours and Nick and Gabriel will be here!!!!! YES!!!!!

Fever!!!

I spoke to soon. While I was here in Target house typing my entry, Regina was in the hospital bewing admittedn with fever. I dont know for how long we get to stay to St Jude this time but pray for a short entry. .

Diana

Regina and her TPN

Rainy day in many ways

Yes, it is raining in here today.
And Regina is under the bad weather. Last night she fell asleep around 12 at night. Then she woke up every hour and when it was time to wake up around 9 am this morning , she was tired and whiny and did not want to wake up.

Today she had labs drawn and her counts dont look to good. her ANC was 200 her platelets 2700 - which means she is receiving platelets right now. And her hemoglobin is slowly going down also. She is not very active and all she wants to do is sleep. She tells me that she is cold( our heater was set max) . We where drippin' wet and she was chillin' cold. Warm blankets dont help much. She gets antibiotics for her little boo-boo that looks red and does not want to heal( on her arm).

It is 2 pm now. I stay to Target house until 3 , because I have to wait after Liberty Mutual guy who will check the damages on my car. Then I go back to hospital. Until then I send my best thought to St Jude and hope that Regina does not catch fever tonight.

About me

I woke up this morning with strong need to write something. But I really was not sure what . SO I finally decided that I tell you more about myself.

Hi!!! My name is Diana. In St Jude people often ask me where am I from. So I tell them I am from Ca. "Oh, I see, but you have accent???" Well, I am really from Estonia and I Was born to speak Estonian( not Russian, Estonia and Russia have love/hate relationship- dont ask more questions).

Oh, but where is Estonia?? , they ask.

I say you know where is Finland?? Do you know where is Latvia, Lituhania, Baltic sea?? Estonia is somewhere there.
"ok" , they say, and wonder away.

In year 1997 , 11 November I met my Husband Nick. I was 19 year old and had no plans getting married in near future. I was with my co-workers and we where having fun . The place where we had fun was middle of nowhere. lol Middle of open water. We met on a board of cruise ship Regina Baltica.( Yes our daughter is named after the ship). He was on his way back to Sweden and I was on my way to Sweden also but with work issues.

He asked me to dance, and we had fun . I asked his phone number. Called him after 2-3 days I think, ( did I really do that????).
Then In december he sent me ticets to visit him in sweden. I WENT TO SWEDEN !!!! I stayed for a while.

Then In february I went to sweden again . And big things started to happen. One morning when I was ready to go back to Estonia he handed me envelope. I had no idea what the envelope was hidden inside.

I opened it up and it included 2 ticets to LONDON!!!!! He remembered . I told him that I wanted to go to London. It was my dream destination. At a time I was obsessed with Princess Diana and I wanted to see the country she lived.
London was beautiful.

BUT on our way to England , Nick did something. He pulled out little box. I had feeling this might happen. We where in the airplane and he PROPOSED!!!!! At that point we had lived together only for 2 weeks. GRAZY!!!

I sayed YES. I was 19 and I sayed yes. What was wrong with me.????

In 1998 March he moved to USA. I stayed to Estonia. Then in 1st of June I moved to USA also. ( New Jearsey).

12.28.1998 we got married. We flew to Las Vegas and got married in Excalibur hotel chapel. It was just 2 of us.

9 Months after we got married Regina was born, then we moved to CA. Then june 22, 2001 Gabriel was intorduced to this world.
And that all it is. THE TANS.
Nick is 12 years older than me. ( but he behaves like he is 12 years younger) MEN!!!!!

Before we came to ST Jude I was full time collage student.
I started up studing nutrition but I changed my major to culinary arts. Cooking is my passion. I love cooking.
My specialty is rosemary/ carlic roasted leg of lamb or ribs. One day I hope to open my own little place. ( I DREAM about it ).
I olso love eating and since I do love to eat a lot I work out a lot. My favorite cardio workout is biking. In good days I bike about 30 miles( 35 minutes)

I love dancing- more clubbing. I love trance, dance, hip-hop rock, hip-hop, euro dance. My favorite coctail is Cosmopolitan. I love zinfandel ( red).

I do a lot of scrapbooking( now I have about 9 scrapbooks). I love taking photos and working with photos....

....

Geting ready for Thankgiving!!!

About Thanksgiving!!!
http://wilstar.com/holidays/thanksgv.htm


Some EASY recipes
Creamy Ginger Pumpkin Pie
Recipe courtesy of Andy King

2 15-ounce cans pumpkin pie mix 1 container Cool Whip Light 1 1/2 teaspoons ground ginger 1/4 teaspoon ground cloves 3/4 cup granulated sugar 1/2 teaspoon salt 1 teaspoon ground cinnamon 2 eggs 1 graham cracker crust
Preheat oven to 425 degrees. Follow mixing directions as instructed on the can of pumpkin pie mix. Blend in 3/4 Cool Whip in lieu of milk and fold in ginger. Puree in the blender and pour into graham cracker crust. Bake for 15 minutes. Reduce the temperature to 350 degrees, and bake for an additional 40-50 minutes. Let cool and garnish with Cool Whip and/or pumpkin seeds


Chive and Garlic Mashed potatoes

to 6 pounds Yukon gold potatoes, peeled Kosher salt and freshly ground black pepper 1 cup heavy cream 1/2 stick (1/4 cup) unsalted butter 4 cloves garlic, lightly crushed 3 sprigs fresh thyme 2 tablespoons chopped chives
Put the cut potatoes into a large pot, cover them with cold water, and add a large pinch of salt. Bring to a boil and simmer until the potatoes are fork tender, about 20 to 30 minutes. Drain well. Meanwhile, in a small pot heat the cream, butter, garlic, and thyme. While the potatoes are still warm, press them through a potato ricer or food mill into a bowl. Stir in the warm cream a bit at a time, straining out the solids, until the potatoes are fluffy. Season with salt and pepper and gently fold in the chives. Serve immediately.
Other Recipes from this Episode
Citrus-Marinated Grilled Turkey
Green Bean Casserole
Turkey Gravy
Cranberry-Orange Sauce
Sweet Potato Pie with Crunchy Cranberry Topping


Smoked Gouda Mashed Potatoes

3 pounds Idaho potatoes, peeled and cubed 6 tablespoons unsalted butter 3/4 cup heavy cream, plus more if needed 3/4 pound shredded smoked Gouda Salt and freshly ground white pepper
Place potatoes and 1 teaspoon of salt in a saucepan and cover with cold water. Bring to a boil and cook over medium heat until fork tender, 15 to 20 minutes. Drain.
Return the potatoes to the saucepan and add the butter, cream, and cheese. Mash the potatoes, stirring to incorporate the seasonings. Season with salt and freshly ground white pepper. Serve warm.

OUR ADDRESS

2 very important B clinic ladys and regina.

Reginas new career

FOR CAROL!!

Thank you!! Regina is giving us the best manicures now!! Our nails are pretty and pink!! :)




Regina had great day. She was such a little chatterbox today. Very active chatterbox. I think nobody ever heard her talking that much at once. She sure made miss Keidy and Renee to laugh by telling them how to make turkey and spiders. ;lol

For CAROL!!!

Hurray for Regina!!!

3 doses down , one to go!!! Wohooo!! She did awsome during her third round. Chemo affected her little this time. ANd she even did not throw up when she got her stem cells back!!!! YEY!!. We got out of the hospital around 6.30. We where supposed to get discharged around 4pm. We waited and waited and waited and then I asked from nurse what is going on. She told us that her counts has to come back from lab and then they can let us out of here. Well, it was 5 and no counts, 5.30- still nothing. Finally they found out that the shooter system was down( they insert blood into little containers and shoot it down to lab( kind of like in the grossery store banks, where you but money or checks or whatever whey need into clear containers). So she found somebody who could take reginas blood down and finally after 30 minutes of waiting( from 6 to 6-30) we got out !!!!

Last night Regina had to get some blood. She had very weird reaction to blood. Her legs got really itchy and red . At first doctor thought it is nothing, but then the redness started spreading and after 15 minutes both of her legs where red and rashy. They gave her some Benadryl and it helped a lot. Now she has to get premeds every time she gets blood or platelets( it adds extra 30 minutes in medicine room).


It is 10 pm now. I got really hungry and I was crawing for chocolate. For my luck I had half box chocolate cax mix. SO I got really creative. I took the mix, I added 2 tbsp of peanutbutter, , one egg, 5 oz of apple sauce, water, cinnamon, 2 tbsp sour cream and I mixed it all together. Our apartment smells soooo good now and I am allready eating my cake! It came out delicious!!! oh, the power of chocolate!!! I am so happy now!!

Good night!

Dh and Gabriel will arrive next tuesday!! I can not wait. At least then I have somebody I can pick on;) Love you honey!!!

:)

Med free day.!!! Today is her rest day. She just gets fluids. And tonight she will be hooked up with TPN again. SHe havent had a bite of food since sunday morning. :(

She is way to attached to me. I love it but the same time I even can not stay to the bathroom without hearing her scream - WHAT ARE YOU DOING THERE SO LONG!!!!! lol

OK. I hit the gym now. I need to shred 5 lbs before thanksgiving next week. So I can eat more. lol ( how logic is that ) lol


Carol!!! Thank you for the great packs!! Regina has been enjoying the Disney princess books and sticky board( I guess that what it was called).

I told her that soon the packages will stop and she has to be happy with whatever I buy for her- and she told me that NO, Carol can not stop sending her packages because she will be tooo bored without her fun stuff. HUH?????
Does it mean i'm boring??? Carol, I think she likes you more than me ;)

I know who you are and I will hunt you down!!!

Today started just great. SOME stupid jerk or jerkinna decided that it is ok to bump somebody elses car. YES!! It happend in ST Jude parking lot. Security guy called me because they noticed something was wrong with my car. ( piece here and bump there and RED color attached to my beautiful silver bumper.

I am mad because person was jerk enough to just drive off. NICE and EDUCATED person will always leave a little note with his/her phone number on it. BUT OH no, this person was in such a hurry to get out of the parking lot , she /he probably forgot . HIT AND RUN!!!!

I hope you have nightmares !!!!!!!


On a good note. Regina continues doing well. :) Only thing is that she can not keep her magnesium down. And I told that to her nurses many many times. They told me they see what they can do. But so far nothing. When it is her turn to take magnesium again ther is another nurse and knows nothing about Reginas sturgle to keep Magnes. down. :)

So far so good!!

MRI!!!!! All the scans where clean. No signs of cancer anywhere!!!!! Spinal fluids where clean also. YES!! Yes!! Yess!!!!!!
But doctor did mention that she had more white cells( I think) in her brain, but she said it is caused by chemo and it'll clear away. :):)


Regina was watching tv. Suddenly she sat up and told me that she can not see. I paniced. I ran out of foom and told her nurse what was going on. When I got back to room , Regina had started conversation whit roomservice lady( she was sweeping the floors). lady asked if Regina wants to borrow her glasses. And REgina shouted-- IT IS A GREAT IDEA!! I NEED YOUR CLASSES NOW!!! wow, where that came from. Shortly after that she started throwing up and then doctor and nurse arrived and her vision was back. That was the weirdest thing ever. Chemo really does make them feel the ways , us, parents can not predict. One moment she is happy and ready to play, then suddenly she has the worst mood swings and then ,- she gives me kisses and hugs and tells me how much she loves me and then suddenly she tells me she hates kisses and hugs because they make her throw up. But I understand- I have to. ( At least I try to ) ;)

Regina and Chemo

Today they started her third round of chemo. So far she did really good- if to compare other 2 times. She did not throw up as many times as before. I guess it is because her nurse today just knew what she was doing.( giving her premeds in advance). Now REgina is sleeping and I have little time for my self.

Last night she threw a little fit about me not taking her Coloring pencils to hospitals. I told her to go to the nurse and ask the nurse, but all nurses had where cryons. So now I have to find her some coloring pencils, and sooner I find them the better it is. lol

Before her chemo she even had nice size brakfast( hash browns and milk), but thanks to chemo nothing stayed in :(

All you really need to know is that she is doing good and her blood pressure in perfect.

We are ready!!!

Our bags are backed and we are ready to go---- to Inpatient again :D

I know you all want to hear about MRIs, but I can not get hold of anybody who can tell me about her MRI's. So we really think that there is nothing to worry about!!

Last night there was Talent show hosted by alpha something , something. And at first REgina told me that she just wanted to see what other kids are doing, but then she saw another young boy ( I guess her age) singing and she decided that she wanted to sing. YES!! It was her Idea! So she sand ABC song and she looked really cute doing that ( real girly)

Then today we went to see SPONGE BOB movie!! YES!! The whole theater was full ST jude ( Target house, Ronald McDonald house and Grizzlies house) kids. It was funny movie. Regina did lot of laughing. Later we had nice lunch with Kailen( she did not feel very well today, chemo made her little sick). And of course Regina got pics taken with Sponge bob and Patrick!! Oh, and I forgot to mention big pucket of free popcorn and Sprite!!! Thank you one more time for fun morning/noon.
In about 5 hours we go to st jude and nurses will hook her up with fluids, and tomorrow will be her first and the worst Chemo day.

She reallly does look great and act great. :) She almost looks like normal, healthy her- without hair :)

Carol--THANKS!! What a surprise!! Book included even Estonian folk clothes- but let me just mention that Estonia has over 20 different folk clothing styles( each for every corner and county :). I think I am going to scrapbook that Estonian set :)

SB, Sija Keilen, and Patrick.

Sponge Bob, Regina and Patric!!!!

Regina Singing ABC

My little joke cracker! lol

Regina was in such a happy mood in the hospital. :) She started cracking jokes in A/T and s havent stopped once. She spoke to everybody today and since not lot of people have heard her talking it was a big surprise for everybody to see her running around and just looking cute. :)
Her physical therapist was really really pleased how Regina looks and acts and she sayed that Regina does not need PHYSICAl therapy. SHe is to perfect for it. YES!!!!

We were waiting in the B clinic( bone marrow) waiting area and we were kind of tired of waiting. SO I told regina to go ahead and go see what is keeping them that long LOL. I thought she will say NO, but she ran to b clinic, and started shouting- WHEN IS MY TURN. but since she is so short, nobody could see where the sound was coming from. So I lifted her up and told her to ask again, and she did ask. lol

Then I told her to ask for schedule for tomorrow. And she asked- WHAT"S THE SCHEDULE, LADY???? lol That was the funniest thing ever. She just made my day. I wish she was like that all the time..

Oh, I almost forgot- she was acting all happy and then I told her that I want to take a pic- and guess what??? SHE stopped laughing , turned her smile upside down. and just looked like I was hurting her feelings! lol When I was done with the picture, she started laughing again and was back to her happy REGINA! lol I often wonder, what is going on in her little head???

Don't forget to think about us tomorrow. IT is MRI and Spinal tap day!!!! We have to be in the hospital 6.30 in the morning!!!

Today ...

Today we decided to go to the hospital. Not because something was wrong with regina, but because we wanted to see how Chillis handed 2,5 million dollar check to St Jude. Yes, chillis raised 2,5 dollars nationwide. Original plan was to raise 2 millions but they exceeded that 2 millions. :) Thank you Chillies for caring. :D

Now I am stuck with horrible headace. I thought my head will explode. Nothing seemed to work. No tylenol, no water, no icepacks, not hot pag.. Pain is not that intense anymore but I have lot of pressure and numb pain close to neck and midhead. I never had that kind of headace before. I hope it is just because of stress. ..
Tomorrow regina gets labs drawn to make sure everything looks great and she is ready for her chemo :)


Good lab vibes please:D

Keilin, me and Regina who did not want pic to be taken

Regina Keilin and purple bear

Care bears movie

Mom, I really like Care Bears, they are my favorites :) That is what Regina told me :) Movie was fun. Lots of snacks ( cookies, popcorn, salty natchos, vegetables , ice tea and lemonade. Regina enjoyed fruit salad. :)

Before movie started Target House Manager handed Care Bear DVD to all the kids. And THEN purple Care Bear showed up. Regina jumped up from her chair and raced to hug purple Bear. It looked funny. After movie all the kids got to take pics with care bear. cute:)

Care Bears and SPONGE BOB!!!

lalalalal
Tonight in target house our Care Bear fans get to see Care Bear movie on big screan.
THEN SATURDAY!!!!!___------ Target house kids and parents get to go to movie to see SPONGE BOB- it is a private screaning. Movie comes out in 2 weeks, but target house kids get to see it first for free :) THank you Nicolodeon :) That was really nice thing of you to do for our kids :)

Schedule for upcoming week.

We hanve nothing much to do until friday morning.
Tomorrow Regina has Physical therapy check up- they just make sure they can walk on her heels, on her toes, threw stuff jump and run- nothing special. Same old, same old

On wednesday we have nothing, thursday just A/T( assesment and triage) to make sure her counts are fine

FIRDAY IS SCARY DAY!!! MTI!!. I know she will be fine, but MRI always scare me. And because of her Friday MRI her schedule is little messed up. She was suppose to admitted on Wednesday( this one), but since her MRI is on friday she will be admitted on saturday- 4 whole days - I was so hoping that they can do something about moving her MRI after chemo, but well, it was sheduled 3 months ago and everything is pretty much full. And nobody knew that regina revcovers so fast from chemo. :)

So saturday we start our 5 day horrifying adventure to chemoland. I'm not looking forward her throwing up and not eating . I don't want her to loose 5 more lbs. She gained one lb back since last chemo, but she will loose it for sure. :(

Right now she is sitting on the floor and assembles her 3 D puzzle dinosaurs. She is really good with that. THose dinosaur pieces are very, very small, but she is getting them together. :) good job Regina.

The Incredibles

...were incredible. We went to see it today. Regina loved it- she loves everything now. And of course she laughed out loud whenever she thought it was supposed to be funny. :lol

Reginas Favorites!!!

Favorite food-Ikea Meatballs, Carls Junior star shaped chicken.
Favorite candy- lollipops( square shaped)

1. snack-cheetos
2. toy-deddy bears
3. disney princess- jasmine, Mulan
4. connect the dots, coloring books, reading books, mathematics
5. Games- candyland, cards
6. Computer cames- blues clues, Dora the explorer, gameboy advance games
7. Colors- RED, purple and Pink
8. Car-Mercedes
9. favorite hobby- scrapbooking, coloring
10. Music-Hilary Duft, Britney spears, JOJO, ashley simpson
11. Tv show- lilo and stich, sponge Bob and those funny singing vikings( she does not remember the name of the show)
12. Tv Chanel-Cartoon network
13. Book-All the fairy tale stories or anykind of books. Regina loves books
14. Favorite store- book store, Kroger, Toysor us, Craft stores
15. Shape-diamonds
16. favorite clothes- my little pony and barbie clothes
17. dessert-doughnuts
18. Drink- milk and orange juice
19. nail polish color-red, purple and pink
20. day- day when she can go back to shool
21. animal-cat
22. favoirte thing to do in the hospital- crafts
23. fave thing to do with mom- play with my mom and bake cookies
24. what do I want to get for Christmas-princess castle, crafts, lot of stickers, dollhouse, Play kitchen that talks, kids dvd, princess pillow and blanket, panda bear , black and white bear with a bottle( I dont know what she is talking about), money- so I can by stuff ALL by myself,princess plates and cups, sponge bob stuff, trucks for my brother gabriel, and all the other things that are red pink and purple oh, and I need nailpolish - a lot of nailpolish so I can paint all my fingers different colors( that Is Regina talking). and I want fairy princesses

Regina cone wild. She just keeps telling me all her favorite things( thank you Carol). She is way to funny today. She just talks and talks, and talks and asks questions and makes sure I listen to her. I am not used to her taling that much at one time. It is to much for me to process at once. :)

Good night. I feel sleepy now. :)

I am stuffed!!

We had good day. Regina keeps surprising me with her moods. SHe was on her best behavior today. She was cracking jokes all day long- Oh yeah babe, I drink milk and because of that I have storng bones lol

Kailen and her mom spend afternoon with us and during dinnertime we all went to Ronald mcdonald house for dinner. OH food was great . G rilled chicken, burgers , sweet potato something, vegetable casserole, cakes, pies bread . I am stuffed. :00

Regina and Keilin and Candyland

Saturday.

It is 8.30 in the morning. SUn is shining but I guess wether is still little chilly outside.
I thought that we will go to childrens museum today but regina seems not very interested, so instead we are going to Wolfchase mall. It is a big mall with merry go round. And regina loves Merry go rounds :) Keilin and felicia ( reginas friend and her mom) will come with us. They have day off from hospital so we go and have some fun together. Keilin has ALL( leukemia) and she is here in memphis for 3 weeks , then she goes back to home and then they come back again and so on until her treatments are finished. SHe is cancer free now( no evidence of disease in her) but she still has to get chemo I think for more than a year.

I baked some cressents yesterday because regina requested them. She even ate them and today she requested them again. Lucky for her there were 2 of them left ( I wonder who ate them last night?? NOT ME ??? NEVER. lol)

OK. Update you later about how our day was. :)

Beautiful day!!

It is beatiful here today. Sky is blue and weather is nice and chilly- not to hot, not to cold. Sija woke up around 11 am and after she did we went to Pink Palace. It is museum/ IMAX theater and everything else all toghether. Regina had fun.
Weather was just beautiful and we went to overton Park. Regina and sija did some swinging and after some swingind we went to grossery store.

Store was filled with fresh bakery smell. It smelled nice but not so nice for Regina. She threw up right Away she smelled it. So she and sija went to dollar store and I did my grossery shopping. Now we are back in Target house. I got my favorite papa Brims pork Rinds( those really tough ones) and I just love Papa Brims. So cruncy and yummmm( I know some of you are rolling your eyes over HOW CAN YOU EAT DEAD SKIN - lol. I just love it.
Regina had some cheetos and now she is getting ready to scrapbook ( surprise from Carol). I told Regina to wait when I receive my Ofoto halloween pics but she is not eager to wait. She wants to scrap now. OK. Her wish is HER command. :)

I'm going to gym now. I have to bike off those greasy rinds or I end up myself looking like one great pink fatty pig. :) oink oink oink oink. hehe ;)

Life is beautiful- sometimes :)

Overton Park

Autumn sky

Grazy swingers!!!

Upside down- Sija discover how much fun she can have with one simple swing LOL
Me and my kids

Regina in front of Pink Palace
Me and my kids

Bingo Night
Me and my kids

Weekend off.

Since Regina is doing awsome we get 3 day weekend. NO hospital for 3 full days. What should we do with all the free time in our hands???
Next week is going to be really nerveracking. She has MRI scheduled on thursday. MRIs are the worst. It reminds us the harsh reality. Regina continues to do great and we want to forgot all about what is going on, but sadly , these reminders never let us forget.

She will be admitted for third round of chemo on next friday. ALLREADY!!! TImes flyes so fast here. It was not that long ago when we moved here, and now soon it is time to leave. :) We all wait when we can go back home but I feel sad . I'm so used to being around kids with cancer. I know more about all kinds of brain tumors and leukeemia and other types of cancer than I know about cooking ( how sad is this?) . I know that in the future I want to be more active about educating world about childhood cancers/tumors. I want to learn more about different studies, I want to meet familyes who are facing the same kind of decisions we once we did.

Carol!!! Once again you made Reginas day!! You continue to surprise us with your kindness. And your cards make us always smile :)

Thank you :)

Steven and Regina
Me and my kids

California

Yesterday we had 100% Califronia mood in our little target House apartment. Our friend Steven and Kathy visited us . Steven was here getting his 6 month check up/MRI. He had the same type of tumor as Regina. :)

It was really nice to talk to Kathy and she has tons of information to share.
Please click on your left to Our Friend Steven link to read more about what Kathy had to say :)

Regina and Nurse G.
Me and my kids

Good News !!!

Reginas counts look great. Her bonemarrow engaged very well. :) It means that she does not have to get GCSF every day. And tomorrow we dont have to go to hospital. We still have to go to routin check ups( to check counts) and if her counts and she is ready for next transplant/chemo round, we'll be admitted again( in a week or so).

St Jude - Haigla sissepaas
Me and my kids

Memphis zoo
Me and my kids

Yes! I decided that I want to be midnight priestess this year. eveybody thought that I look more like Elvira. My sister was cat woman- her own version of catwoman lol
Here we are- wicked sisters
Me and my kids

Me and My daughter Regina
Me and my kids

Happy Halloween St Jude

Today was amazing. I never seen so much happiness and laughter and fun in the same place. The whole St Jude was decorated. They had beach theme, and race car, and barn, and Lilo and stich ... It was colorful today. And the candy- Regina got 8 lbs of candy today. ALl the doctors and nurses were dressed up. It was lot of fun. Regina was really happy today.

Then Jennifer from AlSAC asked me to tell our stroy to group from Ca and to people from Dream home. She took us to seventh floor during the lunch time. We met some people we havent met before. People who work for St jude in Ca, LA. It was nice to tell our story to others. There were about 17 people in the room having lunch together. When I got to the part what I felt when I found out about Reginas tumor and how I had no idea what was going to happen to her or to us, I just broke down and started crying. Even some of the people in the room teared up. :) While I was crying and telling my story Regina suddenly started pulling my sleeve. Did I mention I was dressed up? I guess not. I was midnight Priestess but everybody thought I looked like Elvira. I looked at regina and she was giggling. I guess she thought it was funny the way I cryed and told the story.

It is amazing what these people are doing. It was their second time to build a dream home . this time it costed them 500 000 but they raised about million dollars. Now they are planning to build the third home. Hopefully as good as 2 first ones. Good luck to you guys getting money together .

After noon we went to the zoo. Regina was in really good spirits. She was all over the zoo. She loved seeing Panda bears and rhinos and giraffes. She is such a sweetheart. On our way back from zoo- only about half a mile from target house. She fell asleep in the car. Then she woke up and requested Mc Donalds for dinner- and of course she got what she wanted.

Tomorrow we have easy day. Just Medicine room. Then after Med room we will have dinner somewhere outside and then Saturday is all gone.

SUnday we have also med room. And then reginas Best friend from St Jude Kailen and her mom Felicia are coming over for dinner. :)

What about you. WHat are you up to ?

ps. regina was dressed up as Princess.

embarrasing moments from today...

While nurse was taking her vitals in A/T I told regina that she has to eat something because she is too skinny . She told me that since I have 2 tummys( Yes, you heard it right) , she can borrow one from me). Real nice REgina, Real nice.

Then she tome me that I was fat and she wanted to be fat with me. Ok.

Then third moment- after I told her that she has to wash her hands every time after she uses bathroom or every time she touches floor or something tirty. I wish she listened. But instead she looked at me really mean. And screamed at top of her lungs- YOU ARE A BAD MOMMY. She sounded so damn serious I just started laughing . You should have seen her face. She ment business. But luckily she shanged her mind. She decided that her hands feel much better when they are clean.
Oh Regina and your mind.

Elepalooza.

Yesterday there was halloween party here in target House. Lasagna , green beans, mashed potatoes, meatballs , fruitsalat was served. After dinner was trick or treating.

Today Elepalooza carnival. After waiting Pavilion to open its doors for 10 min, we finally got in. We stood in line to wait our turn to get some great goodies. Regina had fun. She was throwing hoops, shooting tarts and got lots of little and big prizes. It felt like christmas. And there was live music playing. After 20 minuts we decided that this kind of crowded enviroment is not the best choice for Regina- her ANC is 0 and it has been zero for 3 days. It is 8 days past her transplant and we are waiting fever to show up. WAITING!!!!

Then after we got back to hospital we saw Keitlyn- nurse pract. She told us that Regina has to get some blood today- second time this week. She got her blood and now we are back in target house just chillin and watching Strawberry shortcake video.

And there is little extra added to target house schedule. On sunday, the 31st, kids can run from door to door to ask candy and if you dont want to participate we can get DO NOT disturb hanger. i have a feeling that we wont be here for sunday. Regina is acting kind of weird and I'm sure that long waited fever will show up soon. ")

Monday

And here it is- our Halloween week. Today was one of the most successful days for us(Regina and I ). Successful meaning , Regina was really happy all day long, she bisycled around in the hospital with red little trisycle. She seemed really happy. Then she got platelets because her platelet count was little low. And of course her GCSF- she gets it every day and she also got her chemo drug vincristine. Busy but happy day.

Tomorrow we have Halloween party here in Target house. On Wednesday there is Elepalooza Carnival in Hospital. It is sponsored by Target. Target is providing each child a goody bag with Tee shirt an hat. And of course there will be lots of cames prizes and activities do do all day long.
On Friday there is halloween party in the hospital- everybody will dress up for that occasiaon- blood bank people dress up as Vampires, child life and E clinic( I belive) dress up as cryons etc. It'll be fun , but busy day.
Regina finally decidid to go as Princess- whatever. She changed her mind like gazzzziiiiillllliiioooon times. I almost got her Mulan outfit and then she sayed . NO. She does not want to be mulan. I think I mentioned that I will dress up as midnight Priestess. Dress looks really cute. Long black one with wide sleeves and attached hat. My sister will make her self look like sexycat- yeah, real apropriate. lol

My husband is still running and training . yesterday he ran 10,5 miles. He is grazy. But he is doing it for the good cause so let him be grazy. And I love him so it really does not matter if he is grazy or not. :lol

Carol- again- you made Reginas day. She received 3 packs today. And she was so inpatient she had to open 3 of them almost same time and poured them all over the floor. Thank you. She still does not understand who you really are and why you are sending her all these great goodies. I am trying to do my best explaning it to her but so far she still thinks you are angel from halloween store ( her and her imagination) . One day she will get it :) I promise.

Long day in the hospital.

Today we went to hospital 10AM and got back to Target house 6PM. She was supposed to receive some blood today but pharmacy ran behind so we waited extra 3 hours. Finally 3o'clock they had blood and she had 3 hours quiet time watching tv and making fun of me because I got so frustrated with my super Mario game. lol.

her counts are lowANC is around 1000. Platelet count is high enough not to get platelet transfusion. But her moodiness is driving me grazy. nothing seems to make her happy. Whatever I do seems wrong. Whatever I say makes her cry, Whatever I by for her( Because she wants it), it is not good . I dont know if it ever returns back to normal- our life I mean. I met some great people here and they are great support and it helps some degree to talk to others but I'm the one in the end who has to find the right solution what to do or how to behave. When she has her good days she is the sweedest girl ever. She kisses and hugs me. She sings me songs. She tells me I'm the best mommy in the whole world. And I tresure moments like that. But I wish there were days like that more. Not once a week - I want her to behave that sweet way every day. :)

My sister went to Grizzly game yesterday. She went with Fed-Ex corporate people. They had lot of fun. :) Our brother back in Estonia was really jelous, because basketball is his life. He was watching the whole game from TV. they actually showed that game in Estonian Television.

I want to go out to dancing and drinking. I really do. I'm so tired not able to do anything adultish. I can say - I'm about to began a virgin again. Ups, did I really say that? I MISS YOU HONEY!! :)

Running for cure

As I mentioned before ,My husband nick is training for ST jude half marathon. Here he explains why he is doing it. :)

http://www.stjudeheroes.org/site/TR?pg=personal&fr_id=1023&px=1008061

Round 2 finished!!!

Yeah!! We are back in target house. Reginas stem cell transplatn went really well. She did throw up once due to yucky taste in her mouth( smell is still really bad around her).

last night when I did the dressing change( CEntral line), I noticed that something was not quite right. I looked little closer and finally got it. Her line was about 3 fingertip lenghts out, but still in her vein. On sunday afternoon she startedd crying and asking for pain meds. She was screaming. Doctors came to check her because everybody knew that Regina never cryes or complains. It was big deal this time. So doctors checked her and thought she mey have some bone pains. because there was no outer sign that there was sometihing wrong with her. She got her meds , big band aid and she finally calmed down for 4 hours. Around middle of the night she woke up screaming that her back and side and everything is hurting. Nurse ordered more tylenol fom pharmacy and she felt little better after receiving it. So yesterday while I changed her line , I told nurse and i finally knew the reason behind reginas cry. Line is inside her vein and the end that is in the vein is little bigger so it wount get out so easily. Muscle has formed around the end and regina had that pulling pain sensation all over her right side and close to line. She just did not know how to adress her problem. Now she has to live with this hurting feeling until everything gets adjusted inside . Since line is still flushing and doing good blood returns ther eis no need to remove the line.

Short update.

Regina is doing great. At least that what doctors keep telling me. They tell me that she is doing much better than other bmt kids. That just warms m y heart. But the same time I see her sick , throwing up, not eating anything and just limp and lifeless and I wonder is that what doctors mean great??? If somebody would ask from me how she is doing I would say she is doing really bad- because I only see what I see and all the numbers dont tell me anything.

Day 3.

It seemed like an easy day for her. Tomorrow she gets no drugs- rest day, and on tuesday she gets her stem cells back. And if everything goes fine we get out on the same day. :)

She ate 1/3 doughnut and drank some fanta. Better than nothing. She smiled and laughed and even did some coloring. :)

Weather here is really cold. I'm not really used to this kind of weather anymore. We miss Cali.

Second day...

and she is done with chemo drugs for today. She did not get sick at all. She looks very tired and pale. Her calcium levels where dangerously slow - they gave her extra calcium . She havent had food for almost 2 days now and because of yesterday was extremely hard day( she threw up most of the day) she lost almost 1 lb . :( Hopefully it'll get better tomorrow. I want her apetite to return and I want her to gain some weight.


Carol.- thank you for all the treats. Regina had fun stamping last night . Every time I read her what you wrote her, she starts a conversation about it. You should hear her. She is to cute. Thank you so much. :)

And it has started.

Second round it is. She got really sick today. usually the first day is the worst. But this time she is much worse than she was with last round. :( She threw up for about 10 times. Now she is sleeping.

Hopefully tomorrow is better day.

My mom is in hospital

She has heart problems. Her health is not the best right now.She was hospitalised 2 days ago. I just hope that they find what's wrong and help her feel better.
She was supposed to have thyroid surgery but she refused to have it- she also has blood clotting problems, both hips replaced with artificail parts and severe depression. She is also had surgery to remove ovarian cancer and she is in lots of different meds. I just hope that she has enough strenght to recover. She is only 50 years . And hardest part is that she is in Estonia and we are in US. Only way we can help is financialy because lot of the surgerys are not covered under her plan. And sad part is - more money you have in EST the better care you get- especially in Country side. And we are from country side.

Listen to this. When my mom dad t have surgery to remove tumor/cancer doctors removed wrong part . They removed everything that was not affected with cancer. Then my moms condition got worse. She got infected and started bleeding. Came out that docs performed the surgery in unsanitised enviroment. They finally found out what was wrong. This time they removed the right " stuff". She sitll has problems from surgeryes. :(

And back to inpatient life we go again..

Regina is doing really well right now. She is like new person. Her counts are perfet her spirits are hight and her sence of humor is back. You know what that means??? TONIGHT, we are going to back to hospital and they hook her up with IV fluids. Then tomorrow will be her first day of second round of chemo. She was really upset about it. Today they check her platelets and hemoglobin one more time and hopefully everything is fine. Her ANC was 9000 yesterday- it is the best I have seen it for ages. our stay here Target house stayed short. Here we go again. Week pain and suffering is ahead of her. Hope she stays strong and meds don't make her very sick this time. I hate to seeing her sick.

My dear husband...

I forgot to mention that my dear husband is training for St Jude marathon. I'm so proud of him. He is doing the right thing helping rise money for St Jude. St Jude needs everybodys support. :) I would do the same thing but thanks for my long relationship with going to gym and training with trainer , my knees are just to weak to last that many hours of running. but I salute to everyone who is training or planning to run that marathon:)

Princess Mia

from princess Diaries 1 and 2 was here today. He spoke priefly about movie. Later he visited inpatient suites. That was really great thing to do. But of course regina acted like- I DONT LIKE HER , I ONLY LIKE YOU MOMMY. I apologised and she completely understood. IT was really nice to meet her. We did not get pic with her since REgina refused taking any pics with anybody.

We have 3 more hours left in the hospital . SHe is getting her blood now and after she is finished we are out of here. :)

Try number 2!!

AND YES!!! FINALLY!!! Everything went really well today. Immature cell count was 88 , which was the best they seen on Reginas case so far. After 4,5 h harvest we are done. Regina did really good. Around 8-9 we know if they got enough cells, but so far seems like they did. And yesterdays harvest produced enought cells 0,5 amount. WHIch is also good. And if they got enough everything we'll be out of ther tomorrow morning . I can not wait. My bed needs me and I need my bed. :)

Not so successful day :(

REgina was supposed to have her pharesis today-1)(spelling?) they will insert a femoral line and run his blood through a machine that will remove CD34 cells and parallel to that she will reveive blood. Well, well, well. She was hooked up and ready to start. . Prior to that she had extra line placed on her right thigh.

Everything was fine. Nurse flushed her lines and we went downstairs to blood donor center where she was supposed to get this procedure done. But it did not go they way they planned. Suddenly non of her lines flushed- WHAT?? lines were fine 15 min ago. SO instead of removing lines from that new line, they tryed to do it from her central hickman line- did not work. It did work, but not the way it was supposed to be working. After 3 hours of figuring out why it is not working , they gave up and sent us back upstairs. NOW, regina is stuck with that extra line for 2 more days- and that line is really bothering her- it is really close to her private parts and it hurts her.

After we were sent upstairs , the doc, who placed her line in came by to see what was going on. GUESS WHAT??? LINE was in working order- it returned blood and received blood. Nurses just did not try hard enough to get the line working. And her line( white line) had something in but now it is in working order. SO I keep my fingers and legs crossed and hopefully tomorrow they get enough stem cells .

Regina does not feel like herself today. She threw up 3 times and nobody seems to care why. It is sunday and there is not enough doctors and nurses in the hospital to answer my guestions. Dr Gajjar stepped by to see what was going on. I could see that he was upset the way things were going, but he assured me that everything will be fine.

I started crying because I was so upset over the whole thingl. I know everybody tries to do theyr best but somethimes it is not enough. They had to try harder. I know it was just the matter of nurses who were here today- they did not have enough experience - that what I believe, because When mashine did not do what it was supposed to do, they took out theyr book and started reading what should be done next. ANyway, I just wanted to let some of the steam out . Don't be mad if you happen to read this. I just have to calm down and think happy thoughts.

Di

She is almost ready for stemcell harvest.

Right now she is in procedure room and they are placing temporary line( for 2 days) inot her vein( this time it is leg). Throu that , tomorrow mashines will pull right amount of cells out. Hopefully they get enough for 3 courses, if not, line will stay in for another extra day and there will be day 2 for stem cell collection.

SHe is doing good. Her counts are ANC- 8000

Late night update.

I'm mad and tired and sick of sleeping in the hospita. Regina has to stay to hospital for another 4 days. Just because they have to monitor her counts really closely because if they reach sertain number , she has to go through stem cell collection. Because she is so small ( her weight they are worried that they dont get enought cells for 3 courses of chemo) . Now we are waiting her cells to reach higher numbers.

I'm really tired with all this waiting . It is just the beginning.

Go anc

1800!!!!!!! ANC is 1800!!1 YES!!! She still has to be 2 days on antibiotics but we'll see. If doctor comes over I ask if I can do it in Target house. :)


Julie Andrews is coming to visit Target house today !! :) She is coming to talk about PRincess Diaries 1 and 2.

wohooo again.

GUESS WHAT??? REGINAS COUNTS ARE UP!!! ANC is 500!!! If nothing goes wrong we get out of hospital tomorrow. And since her counts are moving up we'll have stem cell harvest day coming up. I allready met with the people who are doing this and was explaned what to expect.

I'm not sure about Reginas TPN. Since she started having TPN she is moodier than usual. she is very whiny. Then yesterday her TPN was late for 5 hours ( busy pharmacy) . And while she was off the TPN she was such a good girl. Then they started tpn and she is moody all over. I don't really know how to read her anymore. She is geting so many different meds and it could be side effect of any of those other things, but for me seems that it's more tpn. I think it is way to strong for her because every time she eats some food she makes a comment that she can not eat anymore because her tummy is full. So today when I go back to hospital I mention to doctor that maybe it is possible to cut down the amount she is getting so she is starting to eat?? What do you think Kathy? Did steven ever had problems with TPN??

Anyway, i allready got all the supplies for TPN homecare and seems like it is not the worst thing to do but it is just that something extra that wakes me up every morning hour earlier. SO there you go!!!

Some of you know that I really did not eat red meat anymore.( sometimes I have bite but that is it). So last night I got these really bad redmeatcraivings. So I went to caffeteria and had ribs( beef). After I ate 3 ribs I was about to throw up. It was way to fatty for me and i guess my body is not ready for fatty food. I overeat, but i overeat healty foods in unhealty amounts, and my menu is mostly fat free ( cookie, here and cookie there - only fat). If you have cabbage in your house- I"M the happiest woman on earth. So know, if I come to visit you one day- go to grossery store and buy the biggest head of cabbage you could!!!!

Second floor.

So last night we got moved to second floor. But only just because there was 2 really sick kids coming to fourth floor and the 4th floor was full. Regina was the "heatlhiest kid" on fourt floor so we got moved to second. BUT- we are still on that isolation room with doubble doors and can not leave the room before her counts raise to 400. I dont mind. Today she was little whiny and moody. She refused to eat breakfast and all she wants me to do is to play gameboy advance with her- I MEAN, i HAVE to play it. Yeasterday I ordered her dora the explorer game and princess and the Pauper videotape( in hospital there are no dvd players). So hopefully next week i get to play something new. ;)

Next to us moved a boy named Stanton with her parents. He is a brave little 3 year old with Neuroblastoma. It is his second time back. I hope his mom and dad don't mind if I share his caringbridge website. She does amazing job writing about Stanton.
http://www.caringbridge.org/la/stanton


CAROL!!!! You are amazing. Thank you so much for all the packages. You put so much thought into each pack and regina has something new to do each day. You brought tears to my eyes when I opened my pack. Thank you so much. I'm keeping all the cards you and other Reginas friends are sending her and I kind of scrapbook them in her" card" album. :) Thank you. :)

I just heard that our story got published in Estonian local newspaper. i would share it here but the paper is not online yet( it is monthly paper) and it is in Estonian, so all of you who speak English would have no idea what they are saying. But if paper finally appears online I will post a link.

Oh no :(

We have to stay to hospital until day 16-17,( right now she is on day 12 after BMT). BUT OH yes, her ANC was 100. It is better than nothing.

Only thing I dont like about hospitals is we are stuck on the fourt floor. Her only physical activity is to walk from bathroom to bedroom and from bedroom to bathroom. We can not leave the rooom. her energy and apetite are slowly returing and she wants to do stuff. But what stuff can you do if you are carring big pole with different kinds of meds and hoses are attached to you.

My back is not doing good. I'm trying to find better sleeping positions but with no success. I need real bed, and real food and my husband so I can finally fall asleep safe and worry free. :)

I miss you Gabriel and Nick. I miss getting hugs and kisses from you too. I miss hearing Gabriel sweet voice that tells me I love you Mom. I really, really mis you guys.

We know what future brings..

... but we dont know how to read the clues. I want to share a dream I had about 5 years ago. regina was about month old that time. And this dream still hunts me.

We lived close to water. Lots of water. and we had 2 story house and our backyard was facing the big, big lake. I was taking care of Regina when suddenly she was gone. I started looking for her and I could not find her. Finally I found her body but I did not find her head. There was no blood anywhere and in some weird reason I did not panick. I just kept looking and I finally found her tiny , tiny head. It was somehere in the grass- where grass was longer. I took her hairless head and I placed it to her neck. And it stayed there. It was like nothing never ever happened. And then I woke up.

When Regina was first diagnosed the dream came back to me and I knew now that 5 years ago I knew that something was going to happen but I just did not belive it.
I had lots of dreams after that that predicted my relatives death or healing or weather or even Money matters and they all have come true. I dont dream often , but if I do dream my dreams seems so real I have to wake up to make sure I'm dreaming.

In the past I had tarot cards and i had creat success, but one they when they predicted my car accident I just threw them away. Right away. I'm really curious what they would say about our life in the future. but I'm to scared to face the unpleasent news. So I just wait and see and belive in my dreams.

Just as I thought..

. We are not getting out from hospital yet. Reginas counts bounced back and her ANC is zero . Yesterday it was 100 but today it is big bat zero. Her hemoglobin is low which means she will get blood today. She seems to be doing better and better each day. she finally started eating yesterday and this morning she weighed 14,6 kilos. Up a little.

Dr Gajjar- from E clinic payed a visit today. IT was nice surprize to seeing his smiling face . Thanks dr Gajjar for taking extra time to climb to 4 th floor :D

I finally know what kind of infections Regina has in her line. One is E-coli and other is to hard to write down but both of them are easy to take care of if discovered in early stage- YES!!!!!

Fall is here and of course with fall come nice fall allergies. Yaiks. I hate sneezine million times a day. My nose looks like red potato and my eyeballs look like 2 red pool balls. hehe. I need to go to pharmacy to get some claritin to help with it.

I got a package from Nick today. I asked him to send all the Reginas letters and packages to memphis. Thank you everybody for cards. Regina got lots of cards from Angels all around USA. THANK YOU!!! She havent received them yet, but when I go to hospital I know she'll be asking millions of questions about who sent them, to they have kids, what is their favorite food. hee. I guesss I have to make up someting - I"M NOT going to lye, I just make up a little fairytale for her good. ;)

And it is Saturday.

Here am I enjoying my alone time. Hospitals are not the best places to spend the night- not even one night. I pretty much wake up evey hour- or every time nurses come in to check her vitals or chenge her meds or do whatever they have to do to wake me up . And the reclinging chair that I'm sleeping on is really not 100% reclying because somebody broke it and it only reclines a little so I really sleep sitting up. I'm sleep deprived. I need my beauty rest. But I think I have to wait until end of january to get my long waited rest. lol

Regina is doing great. We are still inpatients because they havent found out what is the other infection in her line. And they are running test to make sure the antibiotics are doing their job. She is still on TPN( total prenatal nutrition). Last night they wanted to start lipids but since lipids(fats) conain eggs she can not have them. My little girl is allergic to eggs. And because of her eggyolk allergy she can not have cerain kind of meds eather. :( She is allergic to eggs but the same time she can eat breads, and pastries that contain eggs.

last night I got her princess story book( all the shortened versions of disney classiks). And I had to read it for her I think for 2 hours. Then I had to read her dora books. She loves Dora books. And that is not it. For her birthday I got Gameboy Advance and some games. Guess what who has to play for her. ME. She just likes to watch. SO I have to play princess and pauper game for hours, and disney princesses games for hours and sponge bob for HOURs, and hours and hours. TO MANY GAMES.

We hope that tomorrow is our last day in the hosptal. And after that we take a little brake from our Inpatient life.
Take care
Di

Regina is doing better.

She is still on antibiotics and thanks to benadril and couple other meds she havent had any reactions to it anymore.
Last night they started TPN( nutrition fluids ). And seems like her apetite is startin to catch up. Today she had alphabet soup and 1/3 of cinnamon roll for breakfast and for luch she had plain spagetti. that is better than nothing.

She havent had fever for 24 hours and if there is no more fevers another 24 hours we'll be discharged maybe on saturday night or sunday morning.

Thank you guys. Seems like prayers are working. She feels better and acts more like real Regina .

AND her ANC is picking up. Today it was 100. SHe was 0 for 4 days.

So far she had 2 platelet transfusions
2 blood transfusions and lots and lots of meds to keep her going. I mentioned that she had line infection- well, she actually had 2 line infections. She had 2 forreing bodies in her line. :( But they are clearing up. and trust me, she is doing great. I saw one girl who had line infecion also and she was not doing good at all. She had fevers for a week and really limp and tired. I asked from doc how common are line infections and he sayed that every other family on this floor had line infection. so seems like they are common.



CAROL---- Thank you for packages. She loves her little treats. She has been coloring for 2 days( she told me that she would like to do more avitivies like connect the dots, or finding differences etc- little hint for you ;)

Prayers needed!!!

Last night Regina got admitted with 39,6 fever. VERY high. Now we are inpatients again until her situation gets stable.

She scrached her head about a week ago and her nail was little to long and she scrached tooo hard. Now one spot- where her scarline is is infected . She got antibiotics last night and everything was fine. Then around 12 am she got antibiotics again. Suddenly she woke me up and sayed" Mom, I need to go to bathroom. SO i took her. She felt really warm. I turned on the light and my girl was swallen all over the body. The worst was her tummy and face. Imagine about 200 mosquito bites. Thats how she looked. I rushed out from the room and called her nurse in to see what is going on. I was scared. I was. I had no idea what was going on. They told me that it is because of antibiotics. And it happens to a lot of the kids.
Nurse gave her some benadril and after hour her itchy , red swollen patches where gone. But oh, boy was I scared.
And that is not it she also had 38.8 fever. Fever went down also.

Then this morning she got the same meds again and nothing happened. They told me that instead of giving it to her one hour, today they will do it for 2 hours.

I also found out what was the reason of reginas fever. SHe has infection in her white line. They dont know what kind of infection but good thing is that it was cought in very early stage so no real damage is done. I just hope that it is not because I did something wrong :(

Now we wate and hope that fever will go away, that infection will clear up and little infection on top of her head will dissapear fast.

And please send some good apetite vibes. She is hardly eating. And she is just skin and bones( 14 kilos). Tonight she will get some Tpn fluids( carbs, protein, vitamins) to keep her going and if she still keeps loosing she'll be on steroids.

OK. I finally got my internet connection here in Target house - but sad part is that I dont get to use it because we are in hospital. :)


Diana

OUR NEW ADDRESS!!!!

Target House II
1811 Poplar Avenue
Memphis , TN, 38104
ROOM 518

Diana and Regina Tan
ALl the letters , packages and get well cards can be sent to that address. :)

We live in target house now and we love it. It spacy 2 bedrooms, little kichen and little living room. Enough space for 3 of us

And thanks to familyes who lived there before we have everything- pots, pans, forks, spoons, cups, coffee mashine, can opener, blender, etc. :)
Regina is not doing very good. SHe still throws up a lot( every time she eats something), she is eating way to little . ANd she gets headaces.

Today her ANC was 0 and her platelets 14 so today we will spend lot of time in Medicine room. SHe feels hot, but termomiter shows no fever.; She cryes a lot and complains aces here and there and seems like all she wants to do is lye down- even if she feels better.

On wednesday I'll get high speed internet in our room( 30 dollars per month+ 450 dollars for needed equipment.) SO hopefully I can check in more often and give better updates.


Regina HATES wearing her mask. She will cry 5 minutes before she buts it on. Who does not know what the deal about the mask- since her counts are low or 0 she has to wear one and it helps to filter out viruses, bacteria, fungus- whatever is flying aroung in Memphis.

We also have to wash our hands 100 times during the day- my hands are dying . I swear. Water 100 times a day is hand kill. lol I need good lotion recomends- and possibly without any scent. Regina is very sensitive to aromas( I even can not shew minty shewing gum) .

1 down, 3 to go.

Yep!! 1 part of her chemo is done. But next 3 treatments will be little easier. next ones are stem cell transplants.

She stopped peeing blood around midnight . So she did not have to wake up every hour anymore to pee in to the cup.
We just got discharged and now are back in Grizzly house. And we got some great news. WE HAVE A ROOM !!!!! YES!!! Tomorrow I have to go to Target house to do the orientation thingi. lol. After that we can move in there. So next 4-5 months we are Target house family.

Regina is one weird girl with even weirder apetites. She asked me to make barbeque toaster strudels. Which means I take to slices of white bread, smear barbeque sauce all over the bread and then she will eat it. YAIKS. Once before she asked this from me and she had horrible diarrhea for 2-3 days. SO today I bought the mildrest barbeque sauce and made it for her. ANd guess what. She only took wone bite out of her sandwich. lol

She is doing ok overall. Hopefully her normal apetite will return soon. And cross your fingers that she will not get fevers. Usually most of the kids get fevers when counts drop.
SHe is not that stinky today. But everytime she passes a gas I can smell the bonemarrow preservitive all around our room in Grizzlies. lol

Regina got her bonemarrow back.

Today around 11 am she got it back. She did really well first 2 hours. No vomiting no pain, only feeling she had was COLD( her bone marrow was brought in frozen, they defrosted it inside the hot water and injected it while it was ice cold. Right away I could feel this horrible smell. SOme prescribe it as corn some as burned popcorn but for me it smelled like fresh , raw pork or chicken. The smell is still really bad in the room and it'll last for a while.

Around 1.20 she started throwing up . And around same time she started peeing blood. Doctors say it is normal that it is happening. SO I must belive what they say.

Suddenly she started screaming and holding her head. "Mommy, mommy take the pain away.Mommy , my head hurts, take the pain away.ALl I could do is to watch her to cry and hold her hand. Doctor' nurses gave her some meds and pain stopped and she fell asleep. But all the bad memories came flushing back. The days she was trowing up,the days she was just lying down and doing nothing, The days she was crying and asking to take the pressure away. I felt like it was happening all over again. I could not help it. She is now the way she was while sick at home with tumor and we had no idea what was wrong.

Now she i crying because she is getting help. SHe is throwing up because meds are working , she is crying because she is feeling pain because of meds, not because she had life tretening tumor. Hopefully she will feel better tomorrow.

We still dont have room in Target house. I think that people in Patient services just are telling me what I want to hear- which is, we want to get a room NOW. i heard this "you get your room withing next 2-3 days " for almost 3 weeks now. Is that normal. I NEED ROOM NOW. With reaginas situation it is better for us if we move before she gets discharged.


DI

Update

Today is the day she is suppose to rest. She is still not eating and feels bad. Yesterday she had bad tummy pain and they gave her some meds that made her tummy really gassy. Tomorrow she'll get her stem cells back and thursday we are out of here.

Nurse finally agreed with me that there has to be done something about her antibiotics. SO instead of taking them every day twice for needed period , she got them through IV line. And next dose she'll get next month. THANK YOU!! I felt so bad her thowing it up every time she even smelled the meds.
Now she throws up everytime she even does her mouthcare( moutwash and some meds to keep her mouth getting sores). Today she complined that her mouth hurt. :(

I just want her to start eating.

Regina is still not eating much. :(

ANd she is getting weaker. She is not able to keep her oral medications down. She threw up today 5 times allready. :( I dont know how am I supposed ot feed her meds for 10 days if she is not keeping it down?? ANd I'm not really liking todays nurse. She is just weird. I told her that regina has problems with cherry flawored meds - and guess what she did. SHE have her cherry flavored meds- she had choice betweens strawberry and cherry but no she gave her cherry. And she even offered her to have some peanut butter crackers.

And Birthday is here. :)

We did get her cake- There is no birthdays without cake in our Family.
She did not want to eat it :(

She is doing really good. Today she is only getting 2 drugs and she is dolerating them really well :)

HAPPY BIRTHDAY! REGINA!!!!

It is not 19th yet but it is soon :) My sweet girl will be 5 years old tomorrow. I can not belive that 5 years has passed . TO fast :( HAPPY Birthday, and we promise we will not spent your next B-Day in the Hospital.
I asked what she wanted for her birthday and she told me that she wants to have some kind of talking Panda Bear. I have no idea what she is talking about but if I find it- ONE day, I'll get if for her. AND GUESS WHAT- she wants to have big red dog- BUT not any red dog. It has to be real and it has to look like Clifford( we have 3-4 toy cliffords). I don't know where she gets these Ideas from . NOT FROM ME!

She is doing lit

Day 1

She is finishing up her last dose for today( worst day out of 5 days). She is doing really good. Sleeping most of the time . She threw up once but doing great.

WE HAVE a ROOM!!!!

Finally!!! LA lalalalal. Can you tell I'm happy??? HA!!! We GOT A ROOM!! We got a room!!!

YES. REgina will be inpatient starting from tonight! What a relief. I'm so happy that her schedule stays almost the same.

AND- sometimes next tuesday ( I HOPE) we finally move out from Grizzlies house and into TARGET HOUSE!!!! What a great day!!!

She'll be hooked up with IV fluids tonight and tomorrow(fingers crossed) if docs think she is ready to get her first dose- SHE WILL GET IT!

NEWSFLASH!!!!

WE are not going to be admitted today!!!!! GRRRRR!!! There is not enough bed spaces so we have to wait 1 or 2 or 3 days before they can admit her and start with chemo. IT MEANS we have to stay here longer. I'm mad .

We are all set!!!

Today we had last set of checkups and tomorrow we have "free day".

They got enough bone marrow for first round of chemo. After first round chemo she will have to go true stem cell harvest to get enough stemcells for rest of the chemo.

I'm scared now.

Right now, at this very moment, Regina is lying down on operating table and doctors and nurses are working hard to get enough bone marrow for at least 3 doses. I saw the room and equipment and it scared me how much was going on in that room. Hoses everywhere, big mashines... Everything will go well. She told me she'll be strong and she will.

Before surgery we spent 2 hours in waiting area( we supposed to sign in 2 hours before surgery started) , and we laughed the whole time. I havent seen her that happy for a long time.She laughed about everything. I wish there were more happy moments like that. There will be , I just know.

But right now I'm just trying to get myself together and stay strong.


Nick and SIja have another 700 miles to drive. They will be here late tonight.

UPDATE!!!!
Everything went well :) I don't have all the details but seems like surgery was a success. REgina is doing good. After she woke up , she asked if she can eat chicken. Nurses told me to start with water and soup but she did not want any. So I gave her some chicken. She ate her lunch and now she is sitting next to me in her Jeep stroller. She says that she is not feeling any pain yet.

Nick called- They will be here in 2 hours. They were speeding and driving to close to somekind of big truck. COps were driving behind them and pulled them over . They said to him that he should be more careful. And this time they got away with warning. HONEY!!! WHAT is it with you. Every time you drive my car you get inot some weird cop situations. :)

WOHOOO!!!

Nick and SIja( my sis) drowe 800 miles yesterday. They are somewhere in Oklahoma now. Hopefully they will be in Memphis tomorrow night. :):) Can not wait to see them . And good thing is that I get some one on one time with my Dh before Regina starts her Chemo.

We spent 2 hours in hospital today. Just everyday stuff- blood checked, temperature, blood pressure. Same old, same old. But today we did it in Medicine room. We never been in Medicine room before.

I think I lyed littlebit in my last post. I said Regina will be admitted on Friday( ups) , she will be admitted on Thursday. I just read my callendar wrong( I still get European/ USA callendar mixed up sometimes). In Estonia week starts with Monday, and in USA it starts with SUnday.

Think about her tomorrow. :)

THank you for prayers and well wishes. :D

Busy schedule ahead..

REginas MRI's were clean!! Is'nt that the great news??? I saw her MRI results and her brain looks flawless :) CLEAN!!!!

But we have really busy and nerw wracking schedule ahead. SUnday we will have to go to hospital to get her labs done .

Monday she will have bone marrow harvest done- it takes about 1-2 hours .
What it mesand is, donor will receice anesthesia so she'll be pain free. And she will have no memory of the procedure. During the harvest procedure , 2 sites, 1 on each hip , are accesed with the collection needle. The needle is inserted several times throught these 2 sites until enought marrow is collected. The harvest is done in the operating room under sterile conditions. The marrow is saved for her to use at a later time as indicated by our childs treatment plan.

This is our first step before chemo. If they dont get enough marrow , she will have second line placed in her groin area and this time mashines will do it's work.

Think about her. She will feel great discomfort and pain for a while, but since she is so young she will recover fast. Infection risk is really big. Hopefully doctors do theyr work really well and she will have no complications what so ever.

Tuesday's schedule is BUSY.
starting from 8 am to 4 pm, she has various apointments. Starting from X ray and ending with e clinic( about 7 apointments total).
Wednesday again, busy, busy, busy, . Thursday - I'm not sure what will happen. But FRIDAY, the 16th is THE day. SHe will be admitted 7.30 pm- and we go from there. Saturday she will receive her first drugs. Pray for her. :)

And we are in Memphis again.

It is our 3d day back. Yesterday she had O/T , and A/T . She had cbc , full chemistry, blood clotting tests done. THey needed to poke her to get blood( for clotting test). They did it 4 times because her veins were not co-operating. She screamed the whole 20 minutes the tryed to get blood out. :(

Now she is getting her MRI done( head and spine). Hopefully tumor shows no signs of growing back . Pray!!!
after this we will see doc Gajjar and then we are done for today. :) So hopefully arond 2 o'clock we can go back to Grizzly house and rest rest of the day.

Birthday Party!!

Regina and H had their part yesterday. It was fun party. :) Regina was not feeling very well yesterday so she really did not participate with enthusiasm. She look somewhat pale and I thought that something was wrong. I had little talk with her and she said to me that she is sad because this party is not ALL about her :( She and her best friend celebrated party together. And also told me that there is to many adults and she is scared of them :(.

She is realy shy girl and she is not stupid girl. She feels like she is starting to grow apart from her friends and thinks that she has no more friends :( That just broke my heart. But I had to but on my party face and stay strong.
H. Mom was nice enough to notify party stuff so they would set 2 sets of candles so the girls can blow off candles individually. Regina went first. She told me to do it for her . I blew the candles and made a wish. :) You can guess what I wished for :)

Thank you Beth for being so understanding :)

She got lot of presents and she has been playing with her presents all day today. She is back to her normal self and is singing and dancing around the house. She was playing my keyboard and gabriel was singing and dancing, then it was gABRIELS turn to play and Regina was sihnging and dancing. They are just to cute.
Regina is trying to tell me that SHE NEEDS Gabriel in Memphis and It is fun there . She appears distant when I tell her about going back to memphis. But she is ok going back there.

I dont know when I get a chance to update . We are leaving on Tuesday and get settled in Grizzly house. Hopefully we get placed to Target house really soon. I dont mind living in RMH but it just drives me grazy that I have to share kitchen with eveybody and if I want to eat I have to get my self into "ok " clothing to go down and fix up my meals and even then if there are people in kithen I have to wait until they are finished. Oh, well. We'll see. :)
Diana

DEAR GUESTS!!!!!!!!

I really have no Idea how many of you are reading our ST JUDE story. IF you get a chance just post a comment here and let us know that you are out there and thinking about us. It'll mean a lot to us all :)

Diana , Regina, Nick and Gabriel

Busy weekend ahead..Part 2

Ok, here I go again. Blogger deleted my post before so now I try to say again what I itended to say before.
We have really busy schedule from tomorrow till Monday.
Tomorrow( thursday)- I have to buy gifts to 3 of our friends. Reginas Best friend H. is coming over and they will have sleep over together. Before sleepover starts we will go to my Best friends son J. birthday.
Then on Friday I have to clean up our house.
Friday Morning Nick will come back from china
Friday night our friens will come see Regina and Me last time before we leave
Saturday Shopping in Costco and from 2-4 is Princess tea party. Regina and H. will celebrate theyr B-days together. And thanks to H. mom this B. day will be memorable for both of them. Thanks Beth!!!
Sunday- I'm not sure yet, but I know we will do something
and Monday- Packing and crying and packing and crying. It'll be really sad day. :(
And we'll say by to Ca for 5 months 9am on tuesday morning.
We receved our ticets today. I felt like crying. Step no2 is getting close.
It'll be long road to recovery but SHE is strong and she can do it. She has to do it. It is to late to turn back now.
She will suffer during the treatments, and she will be in great deal of pain, but if it gives her longer life in this unfair world , why not to but her through that. We love our girl and she is special to us in many ways. She is very much loved and needed in this world.
I want to thank you ST Jude for giving her second chance in life.

I'm really sad about not being able to take my son with me to memphis. :( My husband will stay to CA with Gabriel- he is 3 years old. I will miss him and I will never stop loving him. I will see her during the thanksgiving and Christmas but that is about it. I dont know what will I do without him those 5 months away from home . And of course my dear Husband. I will miss him also. :(
My sister will come with me to Memphis to help me out. I think I COULD handle it alone, but little help does not hurt. Thanks Sija for coming tu USA to help us . She is our only relative in US now. My husbands family is in CHina and my family is in ESTONIA, so we really have nobody here. We made some great friends but nothing replaces old friends and family. :)

Thank you everybody for praying for us and thinking about us. :)

PS- People have asked if they can share my website with theyr friends and family. YES, OF COURSE you can!! More people know about her and pray and think good thoughts the better it is. She needs everybodys support now. :)
Thank you for being there for her. :)

Busy weekend ahead..

http://www.blueskyssalonandstudio.com/- Regina and H. Will have theyr birtday bash here
I just wrote LONG LONG POST and blogger delited it. I'm mad. I'm not in mood to write it again. :(