Friday, December 31

Wow, it is allready last day of this year???

Regina woke up with her ANC being 200!! WOHOOOOO!. From here everythins HAS to go for better. Let's leave all the trouble and sorrow into year 2004, and lets start new with 2005!!!!!! I really hope next year will be better for us and all the other parents who are here in St jude.

Last night we had little toilet accident in our room. lol. Regina wanted to go to potty around 4 AM. After she was done I had to flush. But water kept coming and coming and coming and did not stop. I told the nurses , they contacted maintance team and finally they fixed the problem. But the water flushing sound was toooooooo loud- it sounded like Niagra Falls. lol It was loud.

My teeth are still huring - no meds help, and I look like lilttle chipmunk with my swollen cheek. lol I can not wait till 6th of January, so they can pull my trouble out. And then I have to be in more pain for at least when pain is gone. I have no Idea what I just sayed, but it sounded logical.

I wish all of you Happy New Year.

PLEASE, sign our guestbook. I know that daily I have around 36 unique visitors, but I never hear from you. Just drop a note that you stepped buy and wished us Happy new year ;) . :) We Really, really want to hear from you :) ( now I am forcing you to do so)

Thursday, December 30

It was little better today. :)

Todays tests came back negative- no more infection in her line. :) But she still has to be on antibiotics another 10-12 days :) She is not eating almost anything at all. We tryed to reduce the amount of TPN she is getting, but she still shows no signs of hunger. She looks very tired and stressed. Different Regina . She is still very moody and angry most of the time and smiles only when she makes a joke or thinks what she says is funny.

Nick is in china now. I want to tell you what he did today :) He read about one woman whose daughter has Leukemia( in China), but she does not have money to get her daughter treatment. After reading that he contacted her and sent her money. I almost started crying when he told me that. ( don't tell him). THank you honey for helping other :)

About me- I went to see Dentist. Next week 3 of my wisdom teeth has to be pulled. No fun, but I can not take this pain anymore. It is horrible. No painkillers have helped so far. I got prescription for new ones, but I doubt that there will work. Well see.

Wednesday, December 29

Wednesday update.

All I really know at this point is that Regina is doing somewhat better and fever has not returned. And I know that we will be spending New Years Even in the hospital also.
She is still on 3 kinds of antibiotics and all those meds make her tummy feel not soo good. Last night she woke up every hour to go to the bathroom. Not much sleep .
Today Doctor Yusuf game by - and let me mention that I have seen him most during this week that I had seen him within her 4 Chemo months. He gives me latest updates and what they are going to do next. Now they are working on finding out what kind of infection is it.
Doc Renee mentioned to my sister that It is really good thing that I acted fast. Because If I had waited with her fever one more hour or so, the infection may have started spreading all over her body, and make things 100 times harder, but they got it while infection was still spreading its wings in her line. SO Jey to me!!!

Regina acts very mean most of the time. Her favorite Nurse practitioner is miss Katie. She tells me that every single day, but every time miss Katie comes over she just hides her face from her and tells her to leave her alone( kind off). Every time miss Katie leaves she draws her picture or card, but when It is time to give it to here- she has to hide again.
I so wish I knew what is going on in her growing brain. I want to help her , but she just closes down and stops talking to me when I ask if it hurts somewhere or how she feels. I don't like the fact that she keeps everything inside. Maybe tomorrow is better day. Maybe she will smile tomorrow. :)

Tuesday, December 28

Happy Anniversary to us.

Today December 28th, is our 6th wedding anniversary. This is our first anniversary apart. My dh is flying to China to his brothers wedding :)

Urgent- REgina neeeds well wishes!!!

Yesterday( Monday morning), 6 am Regina wanted to go to the restroom. I picked her up and took her there. She felt extremely hot. I took her temp and it was 40,1. ( high). I tryed to call to the hospital but nobody picked up the phone. So I called nick and we took her to St Jude.

For now I know it is line infection and her line has to be pulled( that what I was told today). They are taking her blood every 4 hours to make sure she is ok.

Since we went to the hospital to early yesterday, there were no Doctors who could help us. They finally found Doc on call. ( hour later). Then doctor Yusuf arrived and did the best he could. Reginas blood pressure was suddenly too high and then drop to really , really low. ( within one minute) .I was scared and out of my mind. Then she started having chills . And those chilles looked like she had a seizure, she was shaking uncontrollably. Finally chills stopped and she started feeling hot. It lasted for about 2 hours. Finally medicine started kicking in and she felt somewhat better.

About 4 pm her temp was gone and she felt much better. Now she is on 3 different antibiotics, and extra potassium and magnesium. She is also on antinausea meds.

Her fever has not returned today and let hope that it will never return. Now we are waiting her counts to recover.

Saturday, December 25

Merry Christmas- NOT

What a day and it is not over yet. Today started with assesement and triage, then she got her G shot and while she received her G shot her labs came back. She needed blood and platelets. No problem + 3 extra hours in Medicine room. She got her platelets and when infusion was complete , she got itchy all over. I forgot to mention that she got premeds, but this time they where not working.
Suddenly she started coughing, and slowly her vomiting turned pink, and then brown. SHe was vomiting blood. In a split second the whole room was filled with nurses and doctors. She got nebuliser treatment( for her congested treatment). ANd since she just got her platelets doctor was not concerned her vomiting blood, because usually when platelets are low bleeding occurs.

Her blood was ready, but since she got bad reaction to platelets, it was taken back to lab and they have to give her new , special blood. So today , instead of spending our night with family, we spend our day and night with our St Jude family. Blood has not arrived yet, so I guess we get out of here around 8o'clock.

Regina is feeling much petter now than before. SHe is not throwing up and her breating has cleared up and her heartrate is back to normal.

My back hurts and I am hungry. :(

UPDATE-Finally, around 6.30pm she got her blood and she is receiving it now. Nick is with Regina now.
I love this picture. LOOK Reginas facial expression when she is waiting Gabriel to open his present. Full of surprise. :) Merry Christmas :)
Here you go Leila :) It really is magical.

Thursday, December 23

Me, Regina with Mrs and Mr Snow
In front of Target House. Pic quality is not the best because I/ Sija havent mastered how to take perfect pictures with night exposure. lol

HO, ho ho and Merry Chistmas. :)

OMG, and it is again this time of year. Presents, people being nice to each other and smiling and pretending they like each other ,but really all they think is maybe behaving this way we get more good stuff.

Anyway. We are doing ok. Not the best day in Reginas life. She threw up constantly today. Nothing seemed to be working. She got her ondensatron, adavan and again- ondensatron. I finally called to St Jude and doc. on call sayed that it is good idea to get her to bed, because then everything will stop. AND he was right. One hour no vomiting. She fell asleep listening her favorite Kids Pop 6 CD. SHe knows all those songs by heart. Before she fell asleep she was singing out loud. My sweet Pop princess.

It is really quiet here now. Kids are sleeping. I am eating Asiago and drinking red Zinfadel. No husband and sister around. I told them to get out of here or I will explode. lol

But Really, I asked them to go clubbing. So now they went off to find a club that is open. Ihope they have fun. I was no mood for fun tonight. I want to keep closer eye on Regina incase she starts vomiting again.

Her counts are doing really well. Usually when she was released from St Jude her ANC was 300, but today it was 5000. Yesterday it was 1800. So weird. Her hemoglobin was 8,2 and platelets 45000. I dont understand why she is so weak and moody and not active at all. I think that she is fighting with that viral infection , and the medicine she gets in the medicine room makes her really sick.

About weather here. It is icy cold and roads are slippery. I really like my 3 weel drive. I love, love , love driving in this kind of conditions. I get this adrenalin rush when I brake and car really does not stop right away because it is so slippery. It takes a little to make me happy :)

I hope you all have safe and Merry Christmas :)

Our Christmas dinner menu

Extra smokey ham
Sourcraut, barley and bacon dish
Estonian Potato salad- I tryed hard to get it to taste the way It tasted in Estonia
Tomato, cucumber salad with sourcream dressing
Apple bread
Cinnamon rolls
Gingersnap cookies
REd wine
Holiday spice Pepsi
Boiled potatoes( Very healthy!!!)
Homemade gravy
Sausages and mac and cheese for kids, or whatever they feel like eating if they dont like homemade dinner cooked from scratch.
And maybe I make something more.

Hey you all!!! If you feel like joinging us tomorrow around 6pm, be our guest. Just take a holiday dish with you ( room 518, Target II) and lets have Merry Chistmas party!!!
More than Marrier:) All our St Jude friends are welcome.

You can call me (949) 290 6959 ( cell)
or Room (901)545 0145

Wednesday, December 22

Let it snow, let it snow, let it snow. It is COLD here. And I wish it was real snow, but it is one of those yucky, mucky wet, icy type of snows. Weather here was horrible today.

Tuesday, December 21

Regina Receiving her last stem cells
Regina and her Family ;)
Regina, her new favorite nurse Brigette and her son Spencer. they surprized us yesterday and gave REgina Christmas present. :)
Gabriels favorite spot in the Hospital. Snow village- one family from Ca donated the whole willage to St Jude

Happy- it is finally over :)

We are done with high dose chemo!! YES!!! Now we are back in Target house and doing nothing. TOmorrow we have to go back to Hospital because Regina has to receive her regular Gshots and new antibiotics because her blood tests showed that there is one evel virus in her and ready to do some serious damage/ :(

last Stem cell tranplant went very well. She only threw up once , during doc injected her stem cells. Then we waited for 4 hours , to make sure everything goes well. Sadly we did not have NO MORE CHEMO party. I ask tomorrow from Lisa and maybe she can do something about it( Regina still has one lover dose of Vincristine waiting for her in medicine room). So maybe she can have her NO MORE CHEMO party then. All our friends here had that party and I WANT IT TOO( regina wants it too).

Tomorrow we have Christmas party here in Target house.
Tomorrow Nick will come here for 4 days.

In the elevator Regina started to sing. - No more chemo for me- yeyeyeyeyey

Monday, December 20

FOR CAROL :) Happy receivers :)
Regina feeling tired after 15 minute drawing session
Regina with capten and pilot and bird
I got little carried away and created some cute giftbags :)

Santa in St Jude.

Today was 86th annual St Jude santa visit. :) Santa comes here twice a year- In july and in December. It was fun. Thanks to ALSAC Jennifer, Local Fox13 news did short interview with us How we feel about Santa and presents and family. :) Thank you Jennifer.

Now back to business. Regina is feeling very weak and tired most of the time. If I compare this round with other 3 ones, this ones hit her the most. She has been sleeping constantly and not actincg like real Regina. Last night her knees hurted. Today she is doing better. Morning started with vomiting, nurse gave her some fenadrin( sp) nausea med. After she got it , she fell asleep. :( Poor baby. She feels so bad she even don't want to talk to anybody. :( Nothing seems make her happy . Tomorrow everything will be over. No more hardcore Chemo.

Gabriel is doing good. He talks a lot about CA. He misses daddy very much and wants to go back to school. :)

Sija is taking care of Gabriel most of the time- Thank you evil Sister.;)

I am worried sick about how everything will go after we leave Memphis. Hospital really feels like second home, and I don't mind spending days and nights there.

Sunday, December 19

Happy Holidays

I can not belive :)

That we are almost done. She is finished with her 3 day chemo course, now she gets tomorrow off and then she will get her stemcells back on Tuesday. And one feek after tuesday she will get her last low dose of vincristine. :) She is doing ok. We are still on third floor and most likely stay there until she receives her stem cells. 4th floor is overfloaded with sick kids. One thing I like about ICU is every nurse has one patient, so Regina gets the best care possible, but the same time they really dont know all the chemo " rules".

Once somebody asked from me what religion I am and I told them I am ortodox. The person asked if I go to chuch and pray daily . I told her that not really. I used to go to church back in Estonia but I quit going after I moved to USA. I also told her that I don't pray. I am sending my best wishes and thoughts to all the kids that need them and those are my " prayers". The person asked if I was afride that after I die I burn in hell from enternety to enternety. I told her that if this is what hell feels like I am ready, because what I am experiencing right now is probably worse than hell- not knowing what will happen and worring constantly. I can take the HEAT!!!!

One of the Christmas presents for Regina is Leapster. Last night I asked one more time about her christmas wishes. That was very wrong thing to do. She changed her mind and now she wants to have LEap Frog. Oh boy. Her and her grazy wishes. I hope santa has time to go to shopping and get that leap frog thing.

And I want to cook Traditional Estonian Christmas dinner this year -.. so much to do , so little time.

Saturday, December 18

Second day. Last round.

As always first day was the worst. Regina was throwing pu constantly and then her nurse thought that is ridiculos and gave her antinausea med Regina never had before. SHe slept from 9am till 4 pm.( waking up only to throw up.)

I really dont like third floor that much. Bathroom is mile away, and parent room is in the other end of the floor. Our nurse acts like she is the smartest person in whole wide world but the same time she keeps making the smallest mistakes( big ones for Reginas sake). Smetimes she does not use alcohol pads before flushing. ANd yesterday she wanted to take blood twice from same line for cultures. If I was not looking close enough and letting her know that she is making a huge mistake, she would have messed up everything. I'm suspicious about her and keep really close eye on everything she is doing with Regina.

Regina got fever 38,8 yesterday. It went down after she got her first dose of antibiotics. So far her blood cultures look good. Hopefully it was just chemo side effect

Thursday, December 16

We are waiting

Latest Update:
Regina will be admitted tonight. 4th floor is still full. She will start her chemo on ICU( third floor) and if there is opening of 4th floor we will be moved up there. :) Yes, I am very exited about it.

Labs from today look great. There were some highs and lows but the most important ones are good. Ken ( nurse practitioner) told us that they are working on getting Regina room. SO we are waiting that to happen :)
Today we had some fud moments in the hospital. Magician Nick was giving kids magic show. Regina had fun watching and figuring out how did he do it, then NWE capten and pilots were in the hospital taking pictures with kids and handling out things for children.

Yesterday santas Elves where in the hospital taking pictures with kids. It is busy here during this time of year.

now everybody lets wait

CAROL!!! Thank you for the newspapers ;) Kids had fun opening things. I did not let them open all the things. I placed Gabriels and and 2 Reginas presents under the tree and we wait until Christmas. If we are inpatients during that time, I just take all the gifts and we open them in the hospital :)

Regina wants to go to the craft store so now we are going to Michaels :)

Wednesday, December 15

I'm mad part 2.

Yeah, and you can do nothing to make me feel better. I am so upset I am crying now. I was told today that they dont know when she will be admitted. And make things harder for me- I CALLED yesterday and asked do they have more info about Reginas admission. They sayed she will be admitted today for sure . And today they have no idea. This is not good.

Tuesday, December 14


it was bingo night here in Target house. I really am starting to miss all the action that is going on around here. :(

I was pretty lucky today. In Target house we play for toys. If we get BINGO we run to the table and get a toy that we like. Today I won twice. So Regina and gabriel both had chance to get a toy. Regina chose baby doll with a carrier and Gabriel got a monster truck. :) We had fun.
Tomorrow we have couple of interviews. ALSAC wants to hear our story and then they film us while we are doing our daily activities in St Jude. Anything for st jude :)

Just another day.

Sorry , I skipped yesterday.
I just did not feel like journaling. It was one of those days that I was very unhappy with myself.
First of all I am nerer happy with myself. there is alwasy something to pick on. But yesterday was really upsetting.
My problem Is I feel hungry all the time. I can not control my hunger. I drink my 10 glasses of water per day, I eat salad, fruits vegetables. I fike 30 miles per day( gym) SOunds healthy ? Huh? Yeah, but around 7pm hunger hits me, and I run to refrigirator to please my hunger and I eat until it is time to go to bed.
I was doing really good for a while. I was loosing and happy the way things were going, but now I just add pounds. :( I dont like it. I dont like it at all. I know I have to do something about it. I probably have to go back to my really strict 1200 calorie diet for 2 weeks. But it is really hard to do it here. I need somebody to do it with me, so it is easier. My sister is not the match. She eats her cereal and yogurt all day long and her last meal is 4 pm and then she snacks her damn carrots. ( sorry Sija). And her vision of healthy person is different from mine. So there you go.
I tryed weight watchers in the past. It worked for a while but I had hard time following though. I really have to but some more thought into healthier living. I dont want to gain 20 something lbs and look like I am all over the place. I have to stop it now . Any good recommendations how to do it right???( I am running out of options). Iused to be one that gives advice about weight loss, but now I am the one in need. ( it is hard to admit that)

Regina is doing great. Her counts look ready for chemo and she acts like Normal Regina:)

Sunday, December 12

Beautiful Gabby.
BIG 2!!!!
Happy Birthday Alex and Gabby!!!!!

Happy Birthday Alex and Gabby!!!

Thank you Vanessa and Tom for inviting us to celebrate Alexes second and Gabbys third birthday with you. Regina and Gabriel had fun :) Regina told me that one day she will have long and beautiful hair( because Gabby has them). And she compared her head with Alexes head.

Enjoy these special times with your kids. And many more to come. :)

Saturday, December 11


Today is not Reginas Admission night. Yeah, you heard right. NO chemo. I got her schedule for monday and she has labs check and that is about it. I was told that she will be admitted on thursday- if there is bed. There better be. Hey you all 4th floor kids- GET WELL really soon. REgina needs to get in .!!!
I just hope that her chemo ends before christmas.

In my past post I added list with kids who really need your prayers. I am sad to tell you that 2 of those kids passed away. Helen and Aaron. I did not know them that well, but I saw them in St Jude every day. They were part of our St Jude family and every time family member dies It affects us rest of the family.

Friday, December 10

Sija and ice sculpture :)
Us , Art Thomason, and ond guy whose name I forgot.( in the middle)

My sister Sija with Kevin Robinson (HOFFMAN BIKES)
8 Dyas before Our lives changed forever. ( May 20th, 2004)

Thursday, December 9

I added pictures
THat is my diary to my fellow estonian speaking friends. But you really dont have to understand estonian to look at the pics. Latest pics are from our tonights outgoing to RMH. Enjoy. Hope it sets the mood for the holidays. :)

Regina on the St Jude Second floor Hallway.

Cutout ornament Regina made for our Little Christmas Tree

Wednesday, December 8

Urgent prayer request!!

It is holiday season. Christmas should be happy and joyful. Full of excitement. But sadly for many families it is season of worring and hoping for a miracle.
I simply ask you to think about these kids and moms and dads.
Big BEN. His tumor has being growing :(

Helen- year old with ATRT was sent home. Not responding to chemo :( She has twin brother.

Madelyn. I get to know her and her mom while in RMH. Her bonemarrow transplant was failure :(

Claire- I met her and her family also while in RMH.

Aaron- just waiting and hoping for miracle to happen

... these are some of them whose websites I have , but there are more kids whos cancer is just stubborn and not responding to chemo.

Gingersnaps for everybody. - made from scratch. :)

Tuesday, December 7

Happy upcoming Holidays. :)

It is almost THAT time again..

Yes, it is almost time to start 4th round of chemo. Regina will be admitted on Saturday and it is her LAST round.
I am looking forward to her NO MORE CHEMO party.If I tell you that it all has been fun and games I'd be lying. It has been nothing but fun and games. We have been worring about her recovery every day. Lot of sleepless nights, lot of tears. But of course we have our fun and we play our games but there is no place better than home and we hope that rest of her life she can play her games at home . :) ( of course we have to come back here for check ups.)
I can not belive how fast time flyes by. It was not long ago when we started and unpacked and not it is time to start packing and thinking about how can we get all this very much needed junk back to CA.

Monday, December 6

Where is everybody???

It so quiet here . Nick left, James left. Nothing to do but just hang out in our room.

Today Regina had fast day. Nutrition consultation went ok. Nothing I did not know about. I don't like that every time different nutritionist sees Regina. So every time I have to tell them blah, blah blah and more blah blah blah.

Then OT( ocupation therapy), she did really well. Usually she does not like going to the second floor. But today she was wearing daddys St Jude Half marathon medal and she was sooo proud to show it to everybody :) . Only thing I am not sure about Regina is that suddenly( month ago) she started writing all the numbers like mirror image. It is really weird. She knows her numbers, she knows how to add and subtract but she writes them like mirror image. Her therapist told me that it is nothing to worry about. Most of the kids at some point do that. She does not do it with letters- just numbers.

And the best news at all- LAST night , after Nick left, REgina started EATING!!! She ate almost 2 mini pizzasa(those kid size pizzas, she drank milk, ate waffle sticks) Then today she ate meatballs and she did not throw up. :). She is doing really good now. SHe has completely recovered from her 3d round. We just have to go to the hospital for routin check ups. Her 4th round should start in a week, but I heard that hospital is fully packed so we MAYBE have to wait little longer :( . I dont like waiting. I want her chemo to end before christmas. !! So kids who you are in the hospital now. Get well really fast so Regina can get in to the hospital( what a wish).

Carol!!! Thank you again! Regina has been doing her coloring all day today :)

Sunday, December 5


Sija and Regina

With kids

And he left.

My Dh went back to Ca today. It was fun while he was here :) He entertained our kids , ran his first half marathon ever and was in pain.

Last Night we went to Texas de Brazil restaurant to eat. I made reservation for 8.30. We went there and waited when they call us in. It took over one hour and millions of checkins from us when we finally got invited in to eat. Middle of our dinner manager came to our table and apologised and told us since we waited for so long we get our dinners 15% off and free desserts. I was so surprised. Dinner was excellent. But it is pricy place. I think our dinner cosed us like 200 dollars( without drinks). So 15% off was nice half marathon present for guys. :) We will defanetely return to that place when nick comes back to visit us during the christmas. :)

Since dessert was free and I fasted whole day I had to have creme brule- it was soooooo gooooood. I want more. !!! !:)

Here is link

Saturday, December 4

Friday, December 3

What a fun eneving.

Today was easy day. Reginas counts where just great. Her ANC was almost 8000. It meant that we did not have to go to Medicine room for G csf. Her ANC was 2 days in a row over 2000.

Then tonight there was spanish night in target house. Spanish songs, food etc. Regina and Gabriel were just making me laugh. When music was playing they where dancing like grazy. YES. Regina gave us a performance of a lifetime. I was laughing so hard I had tears in my eyes.
She has been watching Britney spears greatest hits DVD , and she tryed to dance like her( WITH a CHAIR), then she bended her body in a way I thought it is not possible. And what really cracked me up was- I hope you guys are ready for this- She took 2 chairs. She asked Gabe to sit one chair, and she set another one. Then she grabbed Gabriels face and kissed her . OH, gROsss. SHe did it twice . Gabriel had no power to say no , because REgina smushed his face so hard he had nowhere to run. oh gowd. It was hilarious. You should have seen them. Grazy kids. lol

Now tomorrow, my sweet husband is Running for Marathon. He is ready for his first half marathon. He never ran marathon before so this one is extra special. :)

Wednesday, December 1

Hearing loss.

Today Regina had Audiology evaluation. They do it every time after each round ends. This time news are not so good for us. She has some hearing loss. She does not have to wear hearing aid, but damage is there. And her eveluation showed damage to high pitch sounds. So we have to be really careful about exposing her loud sounds. Now we have to wait until 4th round to see if chemo does more damage to her hearing. :(

SEnd some good thought to her way and pray that her hearing does not get damaged any more .

She also had to get blood transfusion. It took about 3 hours. Now we are back in target house and taking a rest from this long day.

Carol!!! We havent forgot about you. Regina ofthen asks questions like Where Carol really lives, and does she likes me and why is she so good that she sends me so much goodies. :) She really is thankful for everything good that is going around her. :D