(Find Regina)

Hello Kitty...

It is official. Reginas Birthday will be Hello Kitty Themed. I am 99,9 % sure Reginas Birthday will take place on September 29th, because That is when Her energy levels are fine and she has recovered from third Round of chemo. I AM working hard to get SOME Hello Kitty snacks and decorations, but I am so glad that some of my friends are helping me to find some HK themed things. I am starting to wish that Regina had Princess themed party again. lol For a cake at first she wanted me to bake her Hello Kitty shaped cake, BUT we went to Ice cream store ( basking Robins) and she saw Ice Cream Hello Kitty cake, and now she wants THAT instead.... Oh well, What Regina wants, she gets...
I asked her If She wants REAL HELLo kitty to show up at her house- She told me She is not sure because she has never really seen Real Hello Kitty.... OH. She is one Lucky Girl.. All I got for my 8th birthday was some flowers, one or 2 gifts and That is it. Honestly, I do not even Remember my 8th birthday. Weird.. I remember when I was 2 years old, but not when I was 8....

Regina is doing Great right now. We went to my friends house today to meet other friends and eat some yummy food , and afterwards, we went to LAX to pick up my Dh who just got home from Asia.... My sweet husband lost more weight... and what do I do- I GAIN weight. JUST LOOKING AT FOOD I GAIN WEight, and I have no desire to start a diet. I WANT TO but I just can't bring myself to do it...

We will be in CHLA on 5,6,7th of sept. Then we will go to Ronald McDonald house, and Then back to CHLA on MOnday Wednesday and Friday for labs , blood and platelets( I am just guessing). Low counts, more fevers, more nights in hospital....

Isn't she Beautiful :)

... and FULL of ENERGY. We went to pool party today. At first she was complaining that she was bored, but after while she found something to do and just played with other youngsters. She can not swim because of her PICC line, but she really did not want to get into pool. She had fun watching other kids swimming around :)

MRI update...

AGAIn, this is not official report and don't take it seriosly, but DR Dhall just emailed me. He told me that he let Nurse on 4 west read the report and as much he understood from it, seems like tumor has shrank a little more... But he did warn me not to take it very seriosly, sine he has not SEEN reports himself yet. SO, it means that Reginas condition is STABLE!!!!!! Yeah....

Waiting for Monday for more news.

d

Earthquake

I still do not know anything abut Reginas MRI report. Reginas Dr told me that he is away from hospital and does not have access to files.
I guess we have to wait till next week.


OMG.... We just experienced little earthquake. I was taking shower and just stepped out of shower, when I suddenly got dizzy, and felt my house shake couple of seconds. Kids asked -- MOMMY what happened... Since I panic easily I told them to run under kitchen table and wait there for couple of minutes...
I called Leila and told her what happened.. She checked online and told me that there was 4, point something earthquake between Santa ana and riverside.
This was my second time to experience earthquake, first time was couple of years ago and that time it was much stronger..

Magnitude	4.7 - local magnitude (ML)
Time	Sunday, September 2, 2007 at 10:29:14 AM (PDT) Sunday, September 2, 2007 at 17:29:14 (UTC)
Distance from	Lake Elsinore, CA - 13 km (8 miles) WNW (298 degrees) Lakeland Village, CA - 15 km (9 miles) NW (314 degrees) Portola Hills, CA - 16 km (10 miles) ENE (70 degrees) Corona, CA - 18 km (11 miles) SSE (148 degrees) Los Angeles Civic Center, CA - 80 km (50 miles) ESE (116 degrees)
Coordinates	33 deg. 44.0 min. N (33.733N), 117 deg. 27.9 min. W (117.466W)
Depth	2.5 km (1.6 miles)
Location Quality	Fair

Thursday...

Dear Disney Channel....( well, DVR)
Give me strength and energy to watch your show Hight School Musical 2 25th time tomorrow.
Regina drives me insane... in a good way. She watches this show EVERY day, she dances and copies Gabrielas moves , she Laughs at all the jokes EVERY day , and I have to pretend laught with her... Or she will ask- WHAt's the matter with you , Mommy, This is really funny. YOU HAVE TO LAUGH.... YAWN laugh...
Regina is cute... Her FAVORITE thing about this movie is--- MOMMY, YOU KNOW WHAT , HANNA MONTANA IS ON THIS MOVIE TO... BUT YOU HAVE TO WAIT TILL THE END TO SEE HER , because she only dances in the end , because she is really not in the movie, but she is in the movie, because .... um, um , um she is Hanna Montana.... lol
gabriel looks at me and tells me every time we watch High School Musical--- MOmmy, I am bored, this is so boring , I can't take it anymore,,,,,, and then he rans away crying...

And there I am sitting on sofa looking at my kids like they are from other planet.... oi, oi oi.... ;)

:D

I do not understand why time goes by so fast. In a week both of my kids start school. First grade for Gabriel and second for Regina. I do not look forward waking up every morning around 6 AM. NOT at all.

Anyway... I did go to CHLA today. Just for labs. Regina is one lucky girl. lol Today her labs were awesome concidering situation. Her platelet count was up to 72 000 or was it 71 000. Still, fron 41 000 to 71 000 NOT BAD AT ALL!!!!bHemoglobin 10.9, , ANC 1900- not bad....

I also got a call from Dr Dhall. He thinks that we do not have to go to hospital on friday and monday for labs. On saturday Regina will have an MRI and then he will give us a call about how it went..

Regina is doing awesome today. :) Her apetite is back and she has been asking to eat cucumbers all the time. Silly Regina :) She also wanted to bake chocolate chip cookies today. Which we did. And guess who ate 6 cookies right away--- ( somebody who is 29 years old). I promised that today starts diet, but the moment I saw those cookies baking in my oven- I forgot- DIET ? WHO? ME? NO!!! Cookie better than water and salad....

Gabriel is also doing great.:)

Little sad today. :(

Today is monday. Every monday , wednesday and Friday I have to take Regina to CHLA for labs.
I took her there today. Nurses drew her blood, shanged her picc line dressing, made us wait for an hour for labs. After we got lab resluts we were told that Reginas platelets are running low. :( they want her to have at least 50 000 , but she was on 41 000 mark. So nurse called to blood/platelets bank to get Reginas platelets . Afterwhile nurse comes to me and tells us bad news. BLOOD bANK IS EMPTY. NO PLATELETS, NO BLOOD :(::(:( E M P T Y :(:(:( So I asked her what should we do.
She called Dr Dhall and Dr Dhall told us to go home, since everything else on her labs looks great ( not sure what ANC was , but white cells and red cells had improved over weekend). We have to go back on wednesday for more labs, and see if her platelets recovered itself.

NO ALL OF YOU- go donate your platelets and blood to CHLA. ALL kids ( Regina included ) need your help :).

YAWN...

It is sooo nice to be home. Kids are playing, running around... fighting, laughing, dancing, calling each other stupid -- life is normal again...lol

Yesterday( saturday) we went to Reginas BFF's birthday in local Ice Palace ( ice skating place). I did not allow Regina to ice skate because I am worried her falling and hurting herself, and right now I can not afford her to get more injuries. But she did have fun anyway. She watched other kids skating, she ate pizza and cake, and had sleep over at Heathers House. She loves Heather very very much. :)

My boy Gabriel is something else. He is amazing 6 year old. At Ice palace he was littlebit afride at first. he told me that HE WILL NOT ICE SKATE because he is afride of falling. I told him- Please try, after first fall you are done. You do not have to skate any more.
BUT GUESS WHAT. After first fall he picked himself up, fell again, skated, fell , skated, fell skated more. I have not seen such a proud face on him for a long time. HE GOT IT. HE LEARNED TO ICE SKATE!!! I am so proud of him. He fell MILLION times, he hit his head, he fell on his face. .. BUT he just kept going like energizer bunny.... It was so nice to see him doing something he thought he'd hate, but instead he fell in love. . Today he asked me million times when we are going to skating again :) SOOn , I told him. SOON Gabriel :)

Guess what...

Nick had to pay wisit to CHLA because Reginas PICC line did not flush. I KNEW it will happen. I told he should stay to LA for wednesday night but he hurried home instead. And again... HE TOOK MY CAR. MY BEAUTIful not so environment friendly car to drive to LA. I WILL NOT DRIVE HIS manual benz.... no no no.

OK. Real reason for my post is this. Regina is going grazy plannin her birthday. She has everything allready planned. This year it has to be Hello Kitty theme.( I am sure she will change her mind in few days). She wants me to take her to party store , so we can spend fortune there. I told her NO NO NO. I will order her things online. Then he went to Nick and told him , MOMMY is mean, because she does not take me to party store.. hahaha...

And that is not it. She allready put together menu , AND I HAVE TO GET IT FOR HER. ( chillis food) SHE wants ALL her friends come over and play with her. ( No princesses this time). So what I was thinking is, I will do most likely open house from 12-7pm and let it up to kids to show up whenever they feel like it. If somebody wants to stay for sleepover I will gladly let them do so.

SHE wants me to make cupcakes because she wants to decorate them. She wants to play Pin the tail games, dress up, make jewelry ( her new fave thing to do), dance and listen hanna montana songs, watch movies, eat if SHE feels like it, and so on... SHE JUST KEPT telling me to write everything down so I WILL NOT forget.

She also gave me wish list- I POD, portable dvd player, portable CD player/with radio, new barbie movie characters, hello kitty stuff, princess stuff , jewelery beads --- I honestly think TV IS EVIL. She got all these ideas in hospital while watching tv and seeing those commercials and tv shows when kids use it. SHE DRIVES ME INSANE.
AND she is not finished yet. SHE wants me to sort her toys, bring them dows, OR I have to organize her room as nice as possible, so her friends can have lots of fun ??????/ WHAT???? WHOs da mom??? DO 8 YEAR OLDS REALLY BEHAVE THIS WAY???? OMG. WHAT HAPPENS WHEN THEY TURN 9??? whewwwwwwwww Miss boss in da house

FINALLY

WE ARE OUT .... OH MY GOSH. IT was hardest week for us. Reginas counts recovered really slowely this time. It took 7 days for ANC to show up. Yesterday it was 450 and today 1500. WOW. Regina did get some virus( runny nose), but since her lungs sound clean and she has no fever, dr is not worried about it.

Nick Is taking Regina home today, and we stay until Friday. Then we go back to CHLA for labs. On friday I will also sign out from Ronald McDonald House, because I feel like I can take this OC= LA traffic 3 times a week, and since her ANC is up, I do not have to worry about weird no explanation kind of fevers.

Saturday-

Sorry I have not updated for a while. Guess what- We are not on onco floor since they did not have available beds there. Instead we are on 6th floor that is rehabilitation floor. WE got a room ALL BY ourselves, since REgina in neutropinic( sp??) Nurses are more careful up there, they always enter her room wearing masks etc.

Regina has not had any fevers since she got admitted. She received blood and platelets twice and now her energy levels are finally back to normal. She is still on antibiotics to cover whatever they think she may have, but nothing has grown in cultures. Her ANC is still not present , which means we have to stay to hospital until ANC shows up. I guess with GCSF shots it should be readable with no time.
Also Rehab floor has beautiful high sealing with GIANT glass cealing ( dome cealing) and it is very sunny floor :) LOVE IT THERE> ;)

ER

Merry Christmas . Nick took Regina to ER since she had fever ( around 38 something). Right now they are in still ER because there are no available beds on onco. floor. Regina is on antibiotics and I AM hoping that nurses and doctors are trying to find out what causes fevers this time.

If you remember last time Regina was admitted right after platelet transfusion. AND this time exactly same thing. She has been very tired and sleepy since platelet transfusion and Nick told me that regina has been sleeping most of the time. Finally chemo is catching up with her.

0 ANC

Regina and Dr Dhall

Yep. We are this point AGAIN. Today Regina received platelets. Soon she may need hemoglobin.
ANC is 0 and we are giving her GCSF shots to give her immune system a little boost. We also have to stay away crowds ( right now 2 is a crowd.) PLEASE JUST SEND those NO FEVER VIBES to her way. ( Thank YOU)

We also saw Reginas dr today. Dr Dhall told us that everything is going well. Regina looks good, sounds good. He did notice that Reginas left side is littlebit stronger than Right ( squeesez and kicks), but so I mine. lol ;) Regina has lost 1,4 lbs total since june 22nd. Her apetite is not the best right now, and finally she is getting really sensitive to smells and tastes. She can not take her regular vitamins because they make her throw up. Perfumes just make her nausiated, and she can smell bad breath miles away. ;) lol
I am home today. Nick is in LA with Regina. I just need to do some laundry and drink my Slim Fast coctails :)

Sunday...

Regina has had wonderful week. She is doing great. She does look little pale, but that is normal concidering her condition. Her ANC is 750 ( very low), and her hemoglobin was 10,1 ( very close to 8). She has been playing and having fun with Gabriel. We are still in RMDH since we starting to love LA area. ;) Downtown area is beautiful. MY dh was watching after kids while I was enjoying different Estonia activities - fair , theater, ball - I crashed ball in my jeans;) ), bub... It was lots of fun. Estonian Los Angeles play group is VERY good.

OK. I really have nothing else to say. Regina continues to do well and that's all I care about :) If you are in LA area and want to visit Regina let me know:) We love HEALTHY guests :)

:)

We are done with inpatient chemo. Guess our luck-- YES, we got our favorite room again- 430 C. lol Nurses make fun of us allready because of our luck. haha

Regina did very well with chemo. Again- same as last time- she threw up once on monday and then once on tuesday. We did have lots of fun in hospital. Diego ( from dora the explorer) came by, to promote his live show. ;). Few more therapy dogs showed up to cheer up patients.. and that's it.

Now, I really do not have lot to say to you. Dr Dhall and Finlay sound enthusiatic about Reginas treatment plan and they are happy that tumors responded to chemo so well, but there are few dark areas that they are not sure. Anyway- dr's are not sure what is happening in her brain. Something is reaching to brain stem, - it could be( necrosis) dead tissue( brownish fluids) OR it could be tumor growing . I asked about possiblity to remove it, but since it is in s brain stem there nothing much to do. She is sheduled to have another MRi sometimes in September. To see what is going on. Also those other tumors- Dr Dhall wants to get all reginas previous MRIs for evaluation to see if there is something that explains what is going on. Anyway.. It is all very confusing and as much I want to believe doctors I am not sure. Regina is doing great, she really is, and so it must mean that everything is going well.
Talk to you later, to make you even more confused.

Monday, 6th of August :)

Good Morning. We had good weekend. Regina had couple of fun playdates, and Nick and I finally got to go to see movie. We went to see Bourn Identity. Loved it:)

I just called to CHLA to check if there is bed available for Regina, so we can drive there and start chemo. I was told that they have no idea when bed will be ready because they are FULL. But I was told it will be sometimes today. So I guess I am going to do some wating. :)

We got a room in Ronald McDonald house in LA. So that is covered!!! Only thing I do not look forward right now is- un packing, admitting Regina to hospital... etc... ALl those fun things ...

MRI Update:)

Hi you all!!! I am sorry I made you wait so long. Regina had her MRI today. As you know, she does MRI's without sedation. She fell asleep during her MRI and was snoring really loud. :)

Reginas DR called me about hour ago and told us GOOD NEWS. Tumors are shrinking.!!!!!!! That all we need to hear- Stable or Shrinking:):):):):):):): YES!!!!! On tuesday they will have meeting where they discuss and compare her previous and recent scans. After Tuesday we will have more information about Reginas situation:) But so far so good!!!

We will be going home tomorrow ( Friday). We will spend weekend home and then on MONDAY morning we will travel back to CHLA to start second round of chemo. Exactly same chemo. They actually had to take one dose of Irinotecan off from her shedule since she only tolerated 2 weeks of( 2 doses) of Irinotecan:)

Right now regina is doing AWESOME!!! She is unbelivable. SHe is happy and grazy almost 8 year old!!!! I can not keep up with her!!!! :)
Keep those prayers coming :)

:)

Let me just tell you - REGINA IS DOING GREAT !!!! She is full of life, energy and strength. :) She truly is one amazing strong cookie :)

I am having Pre MRI syndrome right now. I used to love taking Regina to MRI's. Because I was always sure her brain was clean of tumors. This time around I feel different. I have not been able to sleep, I am very irritable, and At times I even feel like that I want to skip this MRI. I am so nervous, I feel like throwing up. I hate feeling this way .
BUT we need to know. We have to know. Thursdays MRI is very important MRI. Just keep those prayers coming. Everything will be just fine... everything will be just fine, everything will be just fine......... :)

SHHHHH;)

(2003 Halloween)

( This is how my kids played in 2004)
DO not tell RMDH people that we are not there for a night. In some weird way, they hate us... Since I was in hospital with Regina, and Nick had do drive home , nobody went to RMDH house for 24 hours. THEY told me , they will give our room away IF we do it again. I am really dissapointed now. I mean, I am in hospital with Regina , Nick has to run errands, look for a job, and to top it off, I have to make QUICK run to RMDH to JUST check in once in 24 hours. I am telling you- THIS IS BS!!!!

BUT. WE are home now. Only for 20 hours or so. We got discharged. Reginas ANC is great... She got platelets yesterday and hemoglobin is looking fine also. WE also saw dentist in CHLA. SADLY regina does have HUUUUUGE cavity and one of her teeth has to be pulled out. Dr Finlay told me that as long as she is on her antibiotics it is ok to pull it out. So hopefully tomorrow we get it pulled.

We have appointment to see dr Dhall on Wednesday, and in Thursday Regina has an MRI ( late night). After MRI we will discuss what will happen to Regina. :) More chemo, or no chemo.. We hope MORE chemo. But we also are hoping for that " Silly Miracle" NO MORE TUMORS PRESENT... You never know.....

ALSO... I had my root canal done 2 days ago.... I AM IN PAIN NOW. Painkillers wore off and I am left with poking 3 way canals that are crossing my sinuses... lol

Wednesday:)

(While ago)

Last Night Nick spent a night in the CHLA. I had dentist appointment today, and somebody is here right now to help to clean my house. I need a break from all that.

Nick told me that Regina continues to do well :) They have been playing with barbies and of course, my husband Nick is still called " Daddy Princess". How Nice.. ( i knew he had it in him, he just needed 7 1/2 year old girl to bring it out of him ;) )

Tonight I will drive back to CHLA, so my dh can come home.

Also, I will not have access to my laptop for few days. My laptops power cord broke , and HP is sending me new one sometimes next week. If I get a chance to update it, I will do it, or ask my friends write you an update.

So far so good. :)

Regina Tan
27715 Manor Hill rd
Laguna Niguel
Ca, 92677

:)

Tuesday was great day for Regina:) Her counts are recovering. Her ANC was 450 today. We also saw Dr Finlay and after I asked when we can start with chemo, he told me when her ANC is at least 750. So I am guessing , sometimes next week. :) Regina continues to do well. :) She slowly is starting to eat, she is more active. :) Dr FInlay feels very enthusiastic about Reginas recovery, but again- nobody knows exactly how cancer can react. But since Regina really have not had any vomiting ( besides chemo vomiting), and she only had one headache, that was most likely due to 4 different antibiotics, we have hope. :)

I know it was not nurses fault, but today Reginas fluids bag was leaking. I noticed it when I was taking her to restroom. Floor was wet... and then I saw her nutrition/ fluids bag tripping... of course I was yelling- HEY , REGINAS FLUIDS ARE LEAKING> COME AND DO SOMETHING. I was nervous. I TOLD nurse to get a sample of those fluids and get it to lab for testing... i do not like broken medical stuff.... Hopefully her bag was not contaminated with harmful bacteria. :)


Now-- I want to thank you REgina from Estonia :) Thank you for beautiful flowers. They light up our house. :)

Thank you Leslie for great surprise-- Very needed surprise .... :)

THANK you for all the wonderful letter, cards and photos. REGINA has so much fun looking at them.

THANK you OVEN for that SUPER REGINA PICTURE> :) Everybody here loves it. Even doctors and nurses. It is also one of my favorite paintings..

Thank you My Estonian supporters Young and old- strangers and friends:) WE ARE Overwhelmed with encouraging letters ... :)

THANK YOU ALL OF YOU , who took a time off from your busy schedule and wrote Regina letters and cards. :):)

THANK YOU , THANK you THANK YOU !!!!!! That is all I can say :)

New Better Day.

Monday - I love Mondays when they start out great:0) Regina woke up happy. No fevers . She is coloring, watching tv, talking, asking questions. Her imagination is working great and she is making up silly stories about princesses... Very cute. :)
I believe, that huge part of her recovery I own to myself. ( Thank You diana). Since we now share room with only one family ( 436 a), there is less stress in room. I love this room better. Layout is much better. At least our feet are not facing door anymore. I hate when our feet faced our room door.
Everybody here is waiting reginas counts to come up. We want to continue with chemo as fast as possible. Her ANC has to be 500 before we proceed with it. Hopefully GCSF ( I have to give those painful shots) will work and in few days she is doing GREAT!!!!

We also have very sweet and cute roommate Melissa. Melissa is 6 y 10 m old. She was diagnosed with Medulloblastoma on June 16th this year. Her tumor story sounds a lot like reginas. doctors just kept giving her different medications, and telling her mom that she just has stomach flu, or food poisoning, or she is dehydrated, and needs more fluids. She almost died in ER and doctors still did not believe Her mom that MELISSA was sick and it was not her stomach. Her mom had told doctors many times that problem is in melissas head. Finally, when Melissa stopped breathing in ER - MOM took her to ER DOCTOR, banged on doctors door. doctor took one look at melissa and told her mom - SHE IS JUST SLEEPING. Then melissa started having seizures and she was transported to CHLA ( they are from LA area). She had surgery- after surgery she did not talk for 2 weeks. Doctors removed her brain tumor, but cancer is still present in her spine. And her mom told me that there are lots of cancer cells in Melissas Spine. Melissa can not walk right now. She has to be on wheelchair. She also has few infections in her brain, swelling, she has to have shunt, she has feeding tube, one of her side is very weak. But she is in really great spirit. And she had told her mom not to worry. She is going to be ok. ( just like Regina told me when she was diagnosed in 2004).


I was listening to Melissas story and I just started crying. I just hope that she recovers, starts walking and dancing again. Her doctor is also Dr Dhall. :)

So , here we are.. I could see myself in melissas mom. Not knowing what will happen. Not knowing what drugs could do to her daughter... very scare feeling.")

Sunday;) Christmas in July.:)

(Jenny Mason Photography)
Our day started out great. Regina did not have fever today. last time she had fever was about 4.30 AM and it was 38.4. We were also moved into new room :) Thank You DR Dhall.:)
Our room number here is 436 A and we share it with one other patient.:)

We also had visitor today. Well, 2 visitors. At ronald Mc Donald house I met Pun and his Wife Moose ( cool names huh). We met Pun 2 weeks ago at Ronald Mc Donald house Day camp. He was the one who made Regina laugh:)

We also got visit from Santa- Christmas in July - Regina got 2 Barbies and some clothes for them:) she has been up and playing wih her new toys. Thank you Santa. :)

Regina has been very talkative. I hope it is because her fever is leaving her. Regina has not been eating. She does not even want to eat Carnation instant breakfast drinks. They do taste gross. I thought I rather make her slim fast shake , than feed those yucky tasting substitutes.
Her ANC is 0 , Hemoglobin and platelets are normal. She still gets 3 different antibiotics to cover all possible infections.

:(

Still fighting with fevers. Today she had 38,9 c. Nurses just keep giving her tylenol, and doctors can't figure out what is causing fever. She does have infection in her urine. She also got tested for herpes ( in mouth), more labs, more tylenol, more antibiotics.. I feel nauseated just looking at her taking those meds without not a single complaint. :(
Reginas hair is falling out fast. Soon she will be one Bold Beauty with shiny head.. lol hospital room is ICY cold. And she has air conditioner right over her head.- 3 families have control over that switch, and I am telling you,,, I am not happy how it is controlled. I mentioned it to nurses, they just ignore that part... But honestly, IT IS COLD. So cold, her fingertips started turning purple .. And of course when I told that to nurse, they just told me to cover her up ( not to mention, 5 minutes earlier she had 38,7 fever and they asked me to take her blankets away. Reginas nurse has 4 other patients to take care off, and it it Saturday, but every day in this hospital is very crazy. I also send out few emails to dr and asked nurses about us moving to more private room- again no response. I am not sure how I am supposed to communicate here to get things rolling the way I think it is right.

• Regina is neutropenic
• Reginas nurse is way to busy even to give me her lab results ( I have asked 4 times today within 1 hour period)
• She need private room
• she needs nutritionist who knows about food and cancer more than just FOOD and what will make regina gain lbs. Nutritionist today- don't give regina anything to eat before you give her levothyroxin- ( Regina has been on it for 2 years, and in this hospital she has taken it for 2 weeks now.
• Her nurse needs less patients because more people means more yucky germs
• higher sanitation standards- not just washing hands.. Everything here is very self serve kind of thing.
• I asked if regina can go out to playroom ( just wanted to check). I was told yes, she is fine to go wherever she wants. NOt to mention, she had 38 c fever at a time I asked. IF i was her supervisor, I would fire such nurse right away. OR send her back to school.
• I know I sound really negative, but come on. We are dealing here with Regina, and since Regina is my daughter, I want best for her. I do not like sloppy splish splash kind of treatment.
  
• Since she had fever today- it means 48 more hours in here. THIS HOSPITAL LIFE IS NOT FUN. NOT FUN at all. But we have to do it. I just wish that they have better ways to deal with Reginas situation.
  

Fever...

(Janny Mason Photography
Fever 38,8 today. \
Urine infection
swollen gums
gum sores
tooth pain
NO FOOD because mouth hurts.
bathroom brakes every hour or so
NUMEROUS drugs /antibiotics to see what works
Blood cultures clean
White blood count 100
hemoglobin 8,6- she wil be needing blood soon
platelets 44 000- she will receive platelets today.

Fever and ER.

Update--- Bummer,,, I am telling you. I have giant Latino curse laying over my head. WE are back in same room 430 B with 2 other families. I WAS told that they will not do such thing when counts are low and person has fever, but I guess, we do not qualify for 2 person room for some weird reason. EVERYBODY else form our room gets moved away to 2 family rooms... Not sure why they can't do this to us??? Regina still has 38.3 fever.

And question how many times I have donated blood here- answer is 0. I have couple of health problems and my blood is not good quality blood.


Regina In ER ( and my "chair bed" next to Reginas bed)

yes, last night around 1.30 we ended up in CHLA ER. Regina had 38.4 fever and we just took her to ER. Since hospital is over crowded with children , there were no available beds on oncology floor, so Regina and I had to spend in ER room. OK guys, now I want you to all feel bad at me... I HAD TO sleep sitting up!!!!!! Because there were no sleeping beds in room..( enough about me)

Since Regina had fever when we got there, they threw her labs, she is on 2 different antibiotics, and her mouth hurts, which may mean 2 things- she may have tooth pain, or she is starting to get mouth sores ( common thing with her). If she has a tooth pain- Poor Regina , I feel her pain, if she has mouth sores, she will probably refuse food soon. :( She has all ready lost one pound in hospital.:(

Today, if they get a room we can move away from ER, but we were told that sometimes people stay to ER couple of days, before there area available beds. ( OK guys, NOW I miss ST JUDE, Terribly..

Also, for my surprise Regina was never hooked up with monitors that monitor her heart rate, oxygen levels, pulse, etc. They take her temp, feed her bottles of tylenol and pat on the sholder- FEEL BETTER... I am telling you people- We are spoiled when it comes to hospitals, and I am not used this kind of treatment. ALso, it drives me nuts when nurses start talking to me in Spanish. We live in AMErICA people, what happened to ENGLISH???(Yes, I am frustrated./ And with that said----- Puedo tener un jarra de cervesa por favor


I just hope that whatever Infection Regina is fighting right now, leaves her body and causes no serious damage. Her counts are still very LOW. ANC is 0. Platelets are up since she got platelet transfusion yesterday..


PEOPLE. Come to CHLA and donate blood and platelets. Reginas blood type is B positive. That is how you can help Regina and other kids who need blood products.

wednesday..

Labs look worse and worse each passing day. Reginas platelet count was 43 000. Usually when it is 50 000 or less she needs platelet transfusion. And she did. ANC is 0( ZERO) which means she has no immunity to fight of infections. She also got her GCSF shot today. And after platelets her temp raised to 37,5 again. I do not like this temp jumping like that. In hospital we were told to go to RMDH and just wait until it reaches 38. Great!!!
SO again, here I am asking you to send your happy/healthy thoughts to her way. May she have energy to continue fighting, may her counts reach back to normal SOON.
WE have to stop her oral etoposide today. Dr thinks she needs a break from it. BUTwe have to continue with Irinotecan on monday, because dr Finlay believes that it is not right to stop Irinotecan. I like dr Finlay and dhall. I think they are doing great job. ( Only thing I dislike about it is waiting for them for hours ...).

So much from us. No appointments tomorrow. I have to Give Regina GCSF shot tomorrow all by myself. Oh, fun..

THANK you for cards, packages, pictures. THANK you Michael and Gracy- Regina is counting those quarters RIGHT now.... lol OF course I had to sanitize all the money first. lol. I poured all the quarters into plastic cup, and then poured hand sanitizer over it. Money never smelled so clean before. :)

Tuesday in Ronald Mc Donald house.

Today is very quiet day. REgina has no appointments and we just go to hospital for lunch and dinner.

Regina also had IV chemo yesterday ( Irinotecan (sp??). Hr lttle body does not like that chemo much. She got diarrhea and we have to keep a close eye on her poop ( nice chore.) Oh fun...

Regina may also need platelets tomorrow. Her platelet count is 64000 ( I think) and if it falls to 50 000 or lover she has to get some. And we were told that most likely it is tomorrow. I can actually see those signs her face. Her eyes are starting to have little dark circles under and she looks tired, even though she acts and feels normal.
We were also told that hey may have to stop her chemo for a while since her immune system is not dealing with chemo very well. Stopping chemo means cancer gets to breath which I strongly dislike. BUT stopping chemo means also her immune system gets a little brake and can recover faster and Regina gets stronger.

NOW, I LOVE DR MURRAY. He took my dental pain away. I just had filling but in about a month ago. And root canal at that time was fine, but after filling it got inflamed. IT was so inflamed that even numbing meds did not numb my nerve. SO while he was " killing" my roots, I was in horrible pain. I could feel ever poke, move that was going on while he was freeing me from pain. BUT it was worth it. I am pain free now. It feels awesome not to be in pain. !!!!!

JUSt hope that Regina does not get sick while her counts are dropping...

WOHOO!!!!

No fever. Her temp is back to 36,5 this morning. YES!!!
Right now Nick and Regina are in Hospital. Regina just had her labs done and they are waiting her chemo drugs. ( her chemo apointment was 9 am, and right now it is 10.22???? ). No wonder I have toothache. All that stress, and grinding teeth and lollipops,.

OK NOW. Just hope that my dentist does not have to pull my expensive crowns out because I have infected roots.... dental pain sucks.. ( Or maybe I am experiencing pain Regina is feeling-)

::Atttention:::

Today is Sunday, July 15th. I just got home with Gabriel. Nick called me and told me that Regina is not feeling her best right now. Her temp is slowly getting higher. Las I checked it was about 37c.
PLEASE send those NO fever tonight kind of prayers/thoughts to her way.. We hate fevers, because fevers mean hospital since her immune system is probably not fighting off those infections, and fevers mean she has some kind of infection somewhere ....

Friday , saturday sunda.

(Therapy dog Riley)
(another therapy dog)

I am sorry I have not updated my blog for several days. Big problem around here seems to be server Issues. I am not sure IF RMH does not want to fix it or they do not know how to fix it. Yesterday I told them that my DH can fix it, but I was told that OH, they are working on fixing it…. IT IS STILL NOT FIXED…..

Hi you all. It has been very overwhelming past few weeks. On June 22^nd we were told that Regina may have couple of more months left to live. I still remember those faces and words and expressions on doctors faces when we were left with those devastating news. And then social worker (s) came to talk to us. Everybody wanted to know if we are ready to start hospice, do we have church, what kind of casket we want, do we want Regina cremated. Before cremation do we want open or closed casket…. And so on. Questions came and came and I really felt like , oh no, end is near.. I was so depressed and sad with everything. BUT I was not angry. For my surprise I was not. I just remember feeling helpless. I remember feeling like this disease is going to kill me instead of her. It is horrible feeling to start with..

Now , 3 weeks later I just can’t take eyes off her. She is so beautiful. Full of like, full of some sort of weird positive energy. HER sense of humor is back and , oh boy, she really does get jokes, and most importantly, she understands those jokes and stories and she remembers.

BUT again.. I am so afraid that 2 month deadline… it will be in August 22^nd. I believe that she will fight hard this time around and she will live happily ever after. I have to believe that. I want to know what doctors think, but same time , I so dislike the way they give us the news… Yuck..

Today is Sunday. Regina is doing pretty good. She did complain headache yesterday, but she seems to be ok today.

Yesterday I asked what Regina dreams about. She told me she has beautiful dreams… She dreams that all of us are beautiful Fairies, and our Laguna Niguel house is one huge flower and we all live in it. Yes , fairies is her favorite subject now. We talk about them a lot. Regina also told me that she wants do decorate her Christmas tree with Fairies and Angels. Yes, she still dreams big. J

Reginas apetite is still great. She eat a lot and really healthy. Yesterday I asked her if she wants to have doughnut for breakfast. ( it is her favorite dessert besides ice cream and brownies) – Guess what she told me- MOMMY, I thought you knew… DOUGHNUTS are very unhealthy for us. SO please stop offering me unhealthy stuff. She also made statement about fast food places. NO MORE FAST FOOD FOR her, because people who eat fast food get very fat, are very unhealthy, and can get cancer…. ( I swear, I did not tell her that people can get fat and cancer.) < style=""> We do shop here now In whole foods, trader joes, and Wild oats. Henrys is also one of our fave stores. Vons organic section also.

My only problem here is finding Ecover laundry detergent and softner. I looked everywhere, but those 2 ( everywhere Ilooked stores) stores I looked into were all sold out. L Yuck. I WANT TO DO LAUNDRY NOW..

Now update about my teeth. News are not good. Vicodin is not working. It worked for 24 hours and that is it. It is strong one. 750 mg. But about hour after taking vicodin Pain is back and worse than ever. I did call my dentist and got appointment to see him on Monday. SO I will be home on Monday . And after my appointment I will drive back to CHLA. YUCK YUCK.

My beatiful fighter. :)

5 days on chemo and still full of energy and life.
Reginas address.

Regina Tan
27715 Manor Hill Rd
Laguna Niguel
CA 92677

Regina is still waiting your cards letters, cute craft projects from you. She also likes cutes silly jokes ( kind of like knock knock style stuff , and cute cat and pet pictures.

She is doing great today. Her counts are fine. She did loose 7 OZ while in hospital, BUT right now she is eating like grazy... I mean A L O T .. Not sure where food goes



Reginas daily dose...

Thursday- day 4

Today we were discharged from CHLA. We were supposed to leave hospital around 9 am, BUT our doctor forgot to send prescriptions to pharmacy and because of that we got out around noon. WE took our stuff and took off as fast as possible. Now we are home. JUst for a night. TOmorrow morning we will go back to CHLA since Regina has labs.
her Wednesday chemo was fine. Just oral. ALso her PICC line is doing great.
Now she is on oral chemo. THANKFULLY tomorrow we can cross off TEMODAR( 2 pills)
then she will be on Oral ETOPOSIDE until 7/29. Also She has to take antibiotics, zofran , Levothyroxine,Cefixime... Vitamines, herbal remedies, and couple of things I am not talking about right now. When It is time we will let you know.

She has been tolerating chemo really, really well. I am pleasantly surprised how well. :) I was also told that her counts are getting lower and lower. I can see GCSF shots in near future, and that will be up to me to do. I also have to flush her PICC line, and keep it try and clean. .

Also, I have been in HORRIBLE tooth pain past few days. So bad I can't fall asleep. I finally called my dentist today, got some antibiotics and vicodin. Pain has left me but feeling that something sharp is sticking me inside my gum is there. very uncomfy feeling. I had crown and root canal done few weeks ago and filling, and both of those teeth are hurting like hell. I hope whatever infection is there clears up after dose of antibiotics ,but if not, I do not want them to remove my super expensive crown and do more root canal work. UGH.

Wednesday.

Day 3 on chemo was great day. Regina is tolerating chemo very well. She did throw up only once last night.
Today she got her PICC line in. She told me it is not bothering her much.
we will be discharged tomorrow, and if we have no appointments on friday , then most likely we drive home for a day and bring some stuff to ronald mcdonald house.

THANK you for all the CARDS. Regina still loves opening envelopes.
FINALLY, cards started arriving from Estonia. Our favorites are Handmade cards ;) So get creative and crafty :