:)

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 :

Chemo.

I know pics and story do not match, but I want to share more Prencess party pics. It was OMG kind of event.... ;)

Thank you Risa and princesses!!!!









I miss ST JUDE. I MISS IT , I MISS IT, I MISS IT.
WE are crammed into room with 2 other families- yes 3 families in one tiny room. i like one family, they are super nice . Their daughter has eye cancer. The other family is LOUD LOUD and filthy. They have people coming in and out all the time and tv is turned to max.lol and i miss doctors and nurses in St Jude... it is very weird feeling...

Yes, Regina started her Chemo yesterday late night , around 10.14 pm.
3 chemo drungs, antibiotics, anti nausea meds.. She did very well. No diarrhea, she vomited only once.
BUT she is very moody and does not want me to leave her sight. She has been eating very well, and as I am finding out very good sleeper.

Tomorrow they have to put her to "sleep" to get her PICC line in. She has very "bad " veins so that is why. Last night she got her chemo through IV line.

She misses her friends and says HI to everyone

I also got to meet dr Finlay briefly. I went to bathroom to brush my teeth, and when I got back to our room, Regina was surrounded by 10 something people. i was still wearing my rainbow jammies..lol

Magic is in the air..

DISNEYLAND

If Regina Could, she would by all that stuff....lol

Mom LOOK....

Thank You Friends !!!! We are so lucky to have you in our lives. While opening envelopes, regina discovered funny looking cards. She ran to me and asked what the heck is this, because it says disneyland on it. lol For our surprise someone special had left 4 tickets for us to go to visit disney. And we did , on Friday. Then on beginning of week I got a phonecall from someone I know. At first I really did not understand his motives, but soon after I got it. His family also wanted to do something nice to us. And they did- Grand California was AMAZING. That resort is just wonderful. ALSO, lucky Regina. When we were asked at check in are we there to celebrate something . I told them what happened. Check in guy then smiled and left for a few minutes. Then he arrived with balloons, and guess what -- REGINA WAS CHOSEN AS ONE OF THE LUCKY DISNEY MAGICAL MOMENTS WINNERS. They do it once a day, and this time it was her. Our standard room was upgraded to a nicer room with a view to disneyland , and we also enjoyed watching fire works from our window.

In Disneyland Regina had wonderful time. When we went to disney, I first stopped at city hall and Explained Reginas situation . They smiled and offered Regina special assistance card. Which means , that we did not have to wait on line at all. Finding nemo ride line was about 3 hours long. We got in right away. That was actually best thing about our Disney adventure. :0)

Regina did not get tired after 10 hours of being awake. She was running around, smiling laughing. She did awesome. :) No strollers. it was awesome day. :)

Happy 4th of July....

Fun. We had fun day. We went to SJH community park to see parade and then Regina got her face painted and took a train ride. Then nick took her to Chilis ( reginas Favorite Restaurant), and now we are home , after having dinner in friends house and watching fireworks. I am fulll of meat and I hate meat ( beef) yuck. But I ate it lol and it was delicious...

It is 10.26 and I have nothing to do. Well, I do. I worry. And this time around I worry about medical bills. I just went to blue cross website and logged into our account. OMG. I almost fell flat on my fat estonian @$$. 5 days in hospital. IF we did not have insurance we'd have to pay about 120 000 dollars. Crazy...

I am guessing we have at least 2 more upcoming MRI's- one before chemo starts and one after first round of chemo. If chemo works, then she will have one more surgery ( gamma nife), then more MRIs and Ct scans.. and more chemo.... plus holistic medicine + gasoline at least 100 dollars per week, social workers, nutritionists, OT, PT, endocronologyst, blood transfusions, platelet transfusions, PICC line care, ( from LA to OC, nick will commute). Then Ronald McDonald house fees 25 dollars per night. OMG. I am telling you.. Please stay away from cancer... ( easy to say , huh). I all ready feel exhausted by thinking about what waits for us...

If you are interested of what kind of chemotherapy drugs she will be on... keep reading-

1. Cyclophosphamide 1,5 g/m2/day given on days 1 and 2.
2. Temozolomide 150 mg/m2/day given orally on days 1 to 5.
3. Irinotecan 125 mg/m2/dose given weekly for 3 weeks.
4. Oral etoposide 50 mg/m2/day for 21 days.

And if you want to learn more about these drugs, please go and Google them.

|

Claim Number	Service Date(s)	Provider Name	Total Billed	Amount Paid	Member Responsibility	Processed Date	Actions
07185AC2534	06/21/2007- 06/26/2007	CHILDRENS HOSPITAL OF ORA	$113,642.48	$0.00	$0.00	Pending
07181AI6405	06/22/2007- 06/22/2007	MORAN ROWEN & DORSEY INC	$226.55	$0.00	$69.43	06/30/2007	View EOB
07183AO1826	06/22/2007- 06/22/2007	ORANGE COUNTY PATHOLOGY M	$1,369.25	$111.30	$279.18	Pending
07179414760	06/21/2007- 06/21/2007	LYNCH AMBULANCE	$2,070.00	$0.00	$322.00	07/02/2007	View EOB
07181AI6381	06/21/2007- 06/21/2007	MORAN ROWEN & DORSEY INC	$417.88	$0.00	$123.45	06/30/2007	View EOB

Super Regina by Owen (6y/o)

I want you to see one of the best artworks we have seen in a while ;)
"Super Regina".

Ilaria, if you do not want me to share your website info, let me know. ;)

http://www.xanga.com/TheKeoghs/

Healthy eating..

( THANK YOU GYMBOREE) 2 Clouds of hope...


For Reginas party I asked everybody to bring something healthy.. But I did not specify "healthy". I wanted to see what people come up with ... I wanted to get little inside what people define healthy. For my surprise we got lot of watermelon, carrots and grapes ;) YES , that is healthy and organic ( if it was organic). ANd it is good quick choice for healthy snacking.
Also I was impressed to see people bring very good size and tasty wraps, simple low cholesterol sandwiches, guacamole, low sodium chips, low carbonated drinks, organic snacks. I also spoke to few people what is healthy and they had no clue..... So here I go.

EVERY food is healthy, IF it is consumed in healthy amounts, cooked properly, low of sodium, free of preservatives, hormones, fillers... etc. Try not to use artificial sweeteners. Use fresh herbs...

simple samples- Orange juice, onions marinated grilled chicken, Baked , cornflake covered chicken legs( bake it instead of deep frying). Mixed vegetable salad( mix everything, instead of keeping them separately, Flavor is much better that way. Icy bananas- cut banan as into slices and freeze them and then snack onto them. Non sugared cereals for snacking, Vegetable wraps- take lettuce leaf, wrap shredded lettuce, tomatoes, cucumbers, add some low fat italian dressing- YUMMY and simple snack... Just use your imagination...

We also do not want to feed reginas cancer cells with junk.. and as intimidating corn dogs and cheese pizza sounds, we prefer not to feed her that anymore ( once in a while we will do junky snack, but we stay away from them at all costs).
BTW- REGINA IS DOING GREAT RIGHT NOW!!!!!

My heartfelt thank you to all of you

It was beautiful day to start with. Sunday, july 1st, 2007. Sky was as blue as ever. Sun was shining and we were ready to celebrate. Around 4 pm we headed to our local park to have some fun with friends.
When I arrived, somebody ( Barbara and Jennifer) had decorated park with CUTE pink ribbons. IT WAS MAGICAL. It was just so beautiful and clean.... AND then Jacks mom ( ;) ) and Garrets parernts had set up "roof" and decorated it, Parisa brought sign- Celebrating Regina, and HELEN brought the BIGGEST poster with Reginas picture, so people could sign it !!!
ALSO 2 funny clows Lulu and Betty Poop were making children laught with their silly jokes and balloons.. IT was really cool.
BUT biggest surpirse came from GYMBOREE England and Scotland stores .. OMG Suddenly we saw 2 HUGE clouds of balloons- 200 balloons from Gymboree, ALSo Gymboree representatives arrived which WAS TOTAL SURPRISE. I WAS in total AWE,,, I think I lost my ability to talk... ( which usually never Happens) I was so humbled that Reginas story has touched so many lives, I was moved to tears to see all those people come to gether and HAVE FUN!!! NO MELTDOWNS, no Pizza, no COKE and people still had fun... That was very cool...

AND when it was my time to give a speech, I just was speechless. COMPLETELY... I forgot all words I wanted to say. I was fighting back tears .. There was so much love and care in the air, it was hard for me to add something more to make it more perfect. IT WAS perfect the way it was.
SO THANK YOU ALL AGAIN AND AGAIN AND AGAIN AND AGAIN AND AGAIN for your support !!! It means a lot to us !!!

ALSO- I want to thanks each one of you for making regina cards, gifts, cookies, ... ALSO THANK YOU FOR CHECKS, Cash, gift certificates.-- TRUST me , it all will be used towards her chemo and herbal treatments.

AND thank you for bringing healthy food with you. I was impressed!!!!

Now, about Reginas upcoming schedule.
We saw dr Loudon today. HE IS bestestestest doctor/neurosurgeon ever. Sadly, we can not start chemo yet. We have to wait at least one more week before we go ahead and do chemo. Her scar is still not completely healed and her scull needs healing also. We do not want chemo to to do extra damage.... Dr loudon also told us, IF chemo works, we can do Gamma Knife Stereotactic Radiosurgery- very cool!!!!!!!!

So sometimes in Next week ( monday most likel) we will head to CHLA to start chemo. Until then, lets hope that herbs are working and she is allready healing!!!

ALSO , thank you to city of Laguna niguel for opening Restrooms for this event.. And thank you to many other things I still can't remember, so PLEASE, if you want to be thanked personally by me- EMAIL ME AND TELL ME.. I WANT TO BE THANKED BY YOU!!!

OH, and thank you to photographer ... I will post her information later...
ALSO, all of you who took pics, please email me some of those pictures. I was not in role of photographer, so I do not have good shots this time ;) Whatever I will post in future about this event- is taken by other people... And if you want credit for your picstures, I will post your name under pic :)