Wednesday, October 31

Happy Halloween.... after...

My Fireman
ReGina and Gabriel

Our house when sun goes down....

Devin- The Mummy, Regina-Princess witch, Riley- sleeping beauty and devin- the fish...

Devin and rile are our good friends and neighbors)

Yup, i am done with trick or treating. Regina had tons of fun, and got some candy. Of course, she does not care much about candy, just the Idea of knocking on Dressing up, knocking on doors, and screaming TRICK OR TREAT... Gabriel decided to trick us after 4th house. .. He told me.. He is done and he ran back home


Perfect Halloween Morning...

Trick or Treat??/

regina is doing great. This morning I had to take her to hospital for Labs. her platelets are running low, but dr Dhall thinks that she does not need platelet transfusion. :)
Hospital was filled today with costumes and activities for kids. It was grazyyyyy.....
Anyway, Regina and CO want to wish you happy Halloween... And before you eat lots of candy, think about DENTIST ..... ;)

Monday, October 29


WE ARE HOME!!! WOHOOO. We left RMDH afer staying ther for 22 days... WOHOOO We ARE HOME!!!.
ANC jumped from zero to 1400 !!!!! Her hemoglobin was 10 something and platelets 54 000! WOHOHOHO.
SO , now we are home. I allready got her homework for this week. ( thanks to our cross the street neighbor, and reginas classmate..:) So we did some homework today.
Tomorrow we are planning to go to the Strawberry farm to Pumpkin patch.. And of course, school for both of my kids... Then on wednesday, I have to take Regina to CHLA for more labs, and discuss if we have to continue G CSF shots ( to boost immune system). since Regina is cancer patient and on chemo, then sometimes her immune system plays tricks on her... ANC might be recovering now, but it may happen et tomorrow it is back to below 500... WHICH IS NOT GOOD!!! We hope that she continues to recover -- UNTIL NEXT TIME.

AND I am so in love. Yes, my boy Gabriel. He has become this completely sweet , caring brother and son. He gives me these silly hugs and kisses.. And just looks at me with his brown big eyes.. AWWW. I am so proud of him.

ALSO --- MY SISTA IS COMING TO VISIT ME !!!! She is coming here on 11th and leaving on 23d of november :( AWWW. Only "few" days, but at least she is COMING!!!

Saturday, October 27

Just few past pics of my boy Gabe. ;)

OK, I really can not explain Gabriels early obsession with Make up....
I remember this day ,.. Gabriel was getting really sick and all he wanted to was sit on my lap...
Yup, that's Gabriel. He loved dressing up

My beautiful Regina.. better day...

Trust me, banana tastes better like this....
Gabriel also loves high heels....

Friday, October 26


UGH\.. Still no ANC. And white blood count is 0.1 TO LOOOOOWWWWW.. So , now that there are halloween parties around us, people having fun, decorating houses ( we did decorate outside), Eating jummy foods... guess what we are doing...
STAYING AWAY FROM IT , BECAUSE IT IS UNSAFE FOR REGINA TO HANG OUT with healthy people. :(:(:(:( I am sad , sad , sad. I was hoping that her ANC gets back before Halloween is over, because she has been BEGGING me to take her to Disneyland to see how disneyland looks during halloween... It just brakes my heart to tell her NO , NO , NO....
Today there were halloween celebration games downstairs. All the kids were having fun... AGAIN, I had to pull REgina out of it and tell her, Sorry sweety, your ANC is zero, you can not have fun... You have to hang out with your old not so trendy mom, who is just tooo tired of hanging out in LA. In my PMS blog i all ready wrote that I need GIRLS NIGHT out. NOT in someones house-- I need club scene, trendy people, lots of make up, slutty clothes, and limo driver..;) lol

But joking aside... We are doing allrighty. :) Just hanging in there. :)

Wednesday, October 24

dealing with side effects.

Yes, chemo side effects are out from hiding. Monday Regina Received platelets. Today we spent 4 hours in Day hospitalbecause Regina needed blood transfusion. Her gums are swollen and painful and red. I just hope that ANC shows up FAST. i do not want regina to get mouth sores, because that means she can not eat, and that means she will loose more weight. Most likely she needs platelets on friday...

That's about it..

Tuesday, October 23

Our CHLA friend Grayson needs your prayers...

Grayson was diagnosed with a brain and kidney rhabdoid tumor in July 2007. Grayson was doing great until last weeks MRI revealed something new in his brain and , spinal fluids came back with cancer cells in it. :( Grayson has twin brother and older sister )

To make matters worse. ATRT is one of the most aggressive brain tumors I know, and it has very low survival rates. :(
I hope doctors have good plan how to save Grayson...

from Wikipedia..

An Atypical Teratoid Rhabdoid Tumor (AT/RT) is a highly malignant childhood brain tumor. In the United States each year, 3 children per 1,000,000 are diagnosed each year with cancer of the central nervous system (CNS), and of those about 3% are diagnosed with AT/RT, yielding about 30 new diagnoses of AT/RT annually [1]. Recent trends suggest that the rate of CNS tumor diagnosis overall is increasing by about 2.7% per year. As diagnostic techniques using genetic markers improve and are used more often, the proportion of AT/RT diagnoses also increases.

Monday, October 22


Yup, it is that time again. Chemo side effects are starting to show. Today Regina had to have platelet transfusion because her platelet count was 24 000. BUT she almost did not get it. You know why?? Nurse told me her labs are fine and we can go. I asked what is Reginas platelet count and when I was told it is only 24 000 I almost fell flat on my fat ass... She has to have pltlt. transfusion whenever it falls under 40 000 mark ( it used to be 50 000). I just do not get it. WHY I have to be the one who constantly reminds what should be done and how it should be done... What about those people who have no knowledge about cancer or when procedures should be performed.
I also am very bitter about CHLA line dressing changing procedures. EVERY nurse has their own way of changing dressings. IT drives me insane. I THEY started rubbing reginas hypafix tape with alcohol instead of tape removal fluid. Regina was crying... at first I did not get why she was crying, but then I saw that she was scrubbing her line with alcohol. I asked WHY is she using alcohol- Her answer was - IT is to messy to use REMOVAL pads... WTF??????? Somebody is really lazy... Reginas skin is all red and irritable right now.. After I am done with this post I am going to write a complain about - HOW PROCEDURES SHOULD BE STANDARD, INSTEAD everybody making up their own ways HOW things should be done. OK..

I just needed to let that out. One more reason I love St Jude nurses more than CHLA.( I do have few faves here who do things the way I love ;) )

Friday, October 19

Regina in OC Register :)

I found this article today, while I opened OC Register. Couple of little upsies ( like Regina starting second round in november ( well, it is hopefully last chemo round in November).... :) ALSO , check out rest of the pics on OC register page..

Ducks game is high point for girl battling cancer

Eight-year-old fighting brain tumors gets royal treatment at Ducks game, thanks to help from strangers.

Staff Writer
Comments 0 | Recommend 20

ANAHEIM – Regina Tan, 8, rode on the Zamboni machine on the Honda Center ice Wednesday at the Ducks-Predators game.

Then she went back to her front-row seat, sporting a pink Ducks jersey signed by the whole team.

"The Duck gave me a jersey!" she cried to her mother, running down the aisles after the "The Duck," mascot Wild Wing, presented her with the signed memorabilia.

She also wore a black-and-red knit cap – hiding the bald patches on her head.

It was an extended and tenuous social net that prompted a Yorba Linda man to give his center-ice seats to Wednesday's game to Regina, a girl he never met or knew existed until a few weeks ago.

"She's a Ducks fan," said Don Seaman of Yorba Linda. "I've got five seats on the glass and I've got seats in Row 'B' as well. I said, 'Why don't I give the tickets to Regina? I'm going to pull a few strings.' This is just something very small I can do for her."

Seaman has been a Ducks season-ticket holder since the team's inception. After nearly 15 years of devotion to a hockey team, most people wouldn't give away their rinkside seats to a stranger.

But Regina gave him a reason. The Laguna Niguel resident is fighting cancer for a second time. She already beat the disease once a couple years ago – but it's since returned, assaulting her brain with dozens of tumors.

As late as June, doctors told her family Regina had two months to live. Doctors suggested they take Regina home and enjoy her company.

Her mother, Diana Tan, frantically searched hospitals and clinics throughout Southern California, trying to find another treatment program for Regina.

Now, Regina is weathering her first round of chemotherapy at the Children's Hospital of Los Angeles. Her mother says Regina's tumors are shrinking.

But Regina's future is far from certain, and she starts a second round of the chemical treatment in November.

"All our friends are doing really great things for her to keep her focused and keep her mind off the chemo," Diana Tan said.

Stranger's help

Neither Regina nor Diana Tan had ever met Seaman, who runs a pest control business. It was Diana Tan's friend's husband – Steve Malloy of Placentia – who was friends with Chad Seaman, Don Seaman's son. Chad Seaman, who helps his father run the extermination business, told his father about Regina's plight – and that she was a Ducks fan.

Don called up Steve Malloy and set up the game date through him.

The Tans also were unaware that the exterminator they had never met serviced the home of Ducks second-string goalie Ilya Bryzgalov.

Don Seaman visited his client, a small pink Ducks jersey in hand. Bryzgalov, touched by Regina's story, promised he'd make sure the team gave her a memorable experience.

"My kids are all healthy, my kids are all healthy and I'm OK," Seaman said. "If there's anything she wants, anywhere she wants to go, I'll do it for her."

Wednesday, October 17

Go Ducks....

Who's that Girl ???

ilya Bryzgalov #30
(Togliatti, Russian Federation)

I know you all are grazy hockey fans out there....

I want to thank my good friends "Maira" and Steve for organizing fun evening for Regina and us.
Regina was treated like a celebrity at today hockey game ( Ducks- Predators). Ducks team signed her Jersey( how to you spell that word anyway??), and she got to take a LONG ride with Ice cleaning thing ( she calles it , Eat popcorn, scram like grazy, pose for OC Register Photographer ( yes, we had photographer following her all evening) , and in the end we all moved up , into one of those fancy private booths... OH<>>>> our seats were RIGHT next to DUCKS team... OMG. OMG OMG. it was amazing. THANKS again steve, and sorry I got you into trouble. You have to write me " Steve Joke a lot " manual.... So I can finally start understaning that 20% of jokes I do not get... ;) Thanks for Michael Morrow ( senior Manager of Season and group sales and Kyle Haygood( season sales account executive, ) , and thanks to those other very nice people whose names I can't remember, but they HELPED to get us tickets , and helped to get Regina that cool pink Jersey... and cookies ;)... I am bad with names .. sorry....

BTW, Ducks won 3-1 AND Regina got Hockey stick , and 1 practice puck, and 2 official game Pucks from todays game ;) Also, most of all I want to thank all DUCKS players for signing reginas Jersey. :)

Sunday, October 14

Round no4

Round no 4.

OK. This is so weird. Regina was supposed to start chemo on Friday, but since they did not get her bed until 7 PM, we started on Saturday. BUT we had to come to hospital on Friday to claim Reginas bed. AND we had to wait with chemo until 5 PM on Saturday afternoon because that is how long it took them to get orders straight, and they still did not get everything allright….

BUT , I happily announce- we got nice 2 patient room. AND I got a comfy “bed” this time, and nice view.( for a hospital). But room has no v wireless connection L

This round chemo is also very hard on Regina. She got zofran, Adavan( spelling) to help with nausea. But sadly it did not work. Whatever she ate, drank came out as fast as it went in. ( she threw up a lot.). She also threw up her chemo drugs twice , so right now we are trying to figure out what to do to make her keep her drugs down. Poor Regina. She is so out of it… She looks “drugged”. And talks a lot… A

Irinotecan was allright. No side effects- YET;.

Cyclophosfomide – HORRIBLE. After 10 minutes she started showing side effects( nausea, vomiting).

She also gets meds to make her go to bathroom really often, so everything flushes out as fast it got in….

We did some homework today( well, I asked from Ms French some schoolwork , since Regina will be absent for 3 weeks. ) She did it with huge frown on her face…lol.. She looked like she was about to beat me up, slice me to tiny pieces, pack me into plastic bags, and throw those bags to ocean…She was seriously mad at me for me making her study in Hospital… She thought that she just gets to watch tv ALL day long and do nothing. …

Tomorrow I have to be easy on her since it will be more cyclophosfomide and that will be hard on her for sure….

Also, do not forget to send email to you friends telling about Reginas FUND…

We thank you those who have all ready done so and who have helped to raise funds to Regina J I am sorry for being such a sucky friend lately,..

PS.. McDonald is back on- today I had their Bacon Ranch salad with grilled chicken, 2 fruit and yogurt parfaits,

I also had almost whole box of Annies Cheddar bunnies, 2 apples, Reginas leftover Mac and cheese, fruit, French toast, diet coke, coffee,tea, water, 2 sees candy butterscotch caramels…. Hospitals make me hungry. Very, very hungry.:)

Wednesday, October 10


CAN YOU GUESS???? Tumors ARE SHRINKING!!!! There are still lot of cancer cells present, but overall, it looks really good. Dr Dhall is very, very exited and since he was in such a good mood , he decided that Regina deserves 2 more rounds of same kind of chemo. lol So we are going to CHLA on Friday- get Irinotecan, oral etoposide, temador, cyclophosfomide( sp?), and if everything goes well first stem cell transplant ( well 5th actually if to count past transplants).
Then we will stay to LA area for 3 weeks- RMDH , get back to school for couple of weeks, then another round of chemo and and in December there will be another MRI.
Why same chemo you ask??? We were supposed to start doing outpatient chemo, BUT, since tumors reacted so well to this kind of chemo, we are hitting her with same drugs..
BUT OMG, TUMORS ARE SHRINKING, OMG, OMG, OMG. I am so exited about it, amazing:):):):)

NOW, send your positive thoughts to Reginas way. CHemo is never fun, and it will be hard on her- appetite change, mood change, vomiting, tiredness, longs hospital nights, labs, checkups...etc...Lots and lots of hospital action.:) I hope she does as well as past 3 rounds :)

Monday, October 8

Monday night...

Nothing really extreme or overly exited is going on. On sunday night we went to OC auto show. KIDS WERE exited. seriously... they were like 2 kids in candy shop. Jumping in and out of cars- asking each time- CAN WE BUY IT?? CAN we get hummer, can we by DMW ( gabriel has idea that there is DMW.... lol).... CAN we buy new mercedes... lol I WISH....

We were supposed to go couple of other places, but we chickened out because of REgina... :(

TOday( tueaday) We will be going to LA after school. On Wednesday we see Dr Dhall... and that is it. Not sure what going to happen after wednesday...
Regina does OK in school. She is little to slow... Her mind wonders, she looses interest very fast, and forgets what she is doing, and sometimes I see "tiny" autistic behaviors in her. To many to count... I know in ST JUDE they were talking about brain Tumors and Autism , but I really did not get into it , since our Psych evaluations went fine, and we were told that she is doing pretty good. But more time I spend with Regina I see more and more :weird: behaviors in her- Lining up things and not playing with then, reading but not comprehending ( she gets better), just staring something that is not there, etc... small things, but those small things happen more often..> So I am not sure what is going on in here...

I hope it is nothing serious.... ( how much worse can things be ??HUH???)

Sunday, October 7


(Yup, that's Reginas new car. ;) --- just kidding...

Beth and Heather
And many others who have been very supportive and understanding:)

Saturday, October 6

Just waiting... and some of your questions answered!!!!

!!!!On tuesday MRI !!!!
!!!!On Wednesday Regina will see Dr Dhall!!!!!
and after that new chemo ....
I am exited and anxious about this MRI. Right now I am worried sick. REGINA is doing great. I am just worried that tumors are sitting still - not shrinking. I want them shrink faster, I want doctors know more... I know stable is good, but I can't take any more stable... I want more than stable...
Now, few of you have asked WHAT THE HECK ARE STEM CELLS?? WHAT TO THEY DO?? here is your answer. Blood cells grow from stem cells. Stem cells are the parent cells that have the ability to re-grow all the normal blood cells. Stem cells are found in the bone marrow but they can also travel (or circulate) in the blood stream (called peripheral blood stem cells). And Reginas stem cells were collected from blood stream while her ANC was recovering.

WHY REGINA NEEDS STEM CELL TRANSPLANT??? Chemotherapy given at transplant doses will damage the stem cells so that they cannot recover to produce normal blood cells. To avoid this severe side effect, stem cells that were collected and stored at an earlier time (before transplant chemotherapy is given) are given back to the patient (like a blood transfusion) to replace the stem cells that were lost. These stem cells then grow to restore normal working blood cells.

An autologous stem cell transplant uses the patient's own stem cells to replace the stem cells that are killed by the high dose transplant chemotherapy. These stem cells are collected from the patient at a time before transplant (weeks to months) and are stored until they are needed. Once the high dose chemotherapy has been given, these stem cells are infused into the patient.

The procedure of giving back the patient's own stem cells to restore normal working blood cells is called an autologous stem cell transplant. As blood cells are known as hematopoietic (means blood forming) cells, these transplants are often called autologous hematopoietic stem cell transplants, or AHSCT.

Stem cells can be collected from either the bone marrow or the peripheral blood (bloodstream). The procedure for collecting stem cells from the blood stream or peripheral blood is called a peripheral stem cell harvest or pheresis. The procedure for collecting stem cells from the bone marrow is called a bone marrow harvest. Peripheral blood stem cell pheresis or PBSC pheresis: Peripheral stem cell collection is done when the blood cell counts are beginning to recover after the patient has gotten a course of chemotherapy. (usually 10-14 days after the first day chemo was given). This is the time when the most stem cells can be found travelling in the blood stream. A special central line or catheter with 2 lumens or ports is needed to collect peripheral blood stem cells (PBSC). A temporary catheter may need to be placed only for the PBSC harvest. Your doctor or nurse will tell you if a temporary catheter is needed to collect stem cells. PBSCs are pheresed or collected by connecting the central line to a special machine. The central line is used to pass your child's blood through the machine that takes out the stem cells and then returns the rest of the blood to your child's body. The collected PBSCs are taken from the machine to the lab to be processed and frozen until they are needed. Each PBSC collection takes four to six hours to complete. PBSC collections are done in the clinic but patients can be hospitalized if there are complications during the collections in the clinic.. It can take 2 to 3 days to collect enough PBSC to be used after high dose chemotherapy. G-CSF is a drug which causes a quicker increase in the number of white blood cells seen in the blood after chemotherapy. All patients will get G-CSF as an injection under the skin once a day for several days before and during the PBSC collections, to help increase the number of stem cells in the peripheral blood. G-CSF will be stopped when the collections are finished. Bone marrow harvest : A bone marrow harvest is usually done after your child's blood counts have completely recovered after getting a course of chemotherapy (usually 4-5 weeks after chemo was given). A bone marrow harvest is done in the operating room under general anesthesia and sterile conditions. Part of your child's bone marrow will be withdrawn or removed from the back of the pelvic bone (hip bone) on the right and left sides using syringes and needles. If needed, bone marrow also will be taken from the front of the pelvic bone on the right and left. The exact amount of bone marrow removed depends on your (your child's) size, but will be approximately 400 to 800 ml (2 to 4 cups). Larger children need more stem cells for transplantation and other procedures which need stem cell support. Your child would be in the hospital over night the day of the harvest. Longer hospitalization may be needed if complications occur.

Thursday, October 4


I WANT TO THANK YOU ALL ONE MORE TIME for coming to Reginas Birthday party :) SHE loves all her gifts and giftcards. I told her that she can use ONE gift card ONCE a week.. Oh BOY. She almost started screaming out loud- NO NO NO NONONONONON WHY WHY WHY..( kind of like I do when I am being told I spend to much )

Regina is doing great :) She seems to be doing better in school. I was really afraid that she will NOT get anything, but so far so good. She almost got her VERB activities right ( BTW, I am learning with her it is like English as second language course for me ;) ). She does pretty good with math .. Reading does not cause her much trouble, BUT, it is hell of a work to MAKE HER READ. She makes million silly faces before she picks up one book.... oh Regina :)

Regina is Really Healthy right now. I truly am amazed to see her so normal , active , healthy, full of energy. Trust me... IF I was not her mom , I would not have believed if some brain tumor mom had told me that her kid is doing great.... She is just one amazing sugar cookie.. She is full of surprises, she is full of life, and it is hard for me to believe that she is fighting to stay alive. WHAT goes on in her?? What does she feel? How does she feel? What does she think when I take her to dr's appointments, how does she feel before, after and during MRI? What does she really think about her Brain tumor?

I AM SO happy that she is doing awesome, but I can't let go scare, that I wake up tomorrow and our lives are turned upside down once again.. I do not think that I ever get back that peace I had before she was diagnosed first time. EVERY little thing that happens to her just drives me insane. EVERY time somebody ADVICES me how THEY think is better to take care of REgina- I go mad inside.. ( NOT YOU KATHY ;) lol ) I Hate when somebody tells me - oh SHE IS ABSOLUTELY FINE- you should not worried at all. SHE will do great, she will grow up bblah blah blah.... IS that the truth?
ALl I can say is- I live one day at a time- I do not make plans. If I do , I know nothing goes the way it should. I say yes to friends, but it may happen that I have to cancel minute before going to party... I hate doing it, because IT IS AGAINST MY RULES, but I have to.. So please be patient... IT is not about me , It is about REgina, IT is about Gabriel, kids come first... ( SOmetimes ;))

Tuesday, October 2

Playdough recipe.

Few of you have asked me to post play dough recipe .
Here it is.

2 cups of warm water
half cup vegetable oil.
half cup salt
food coloring or cool aid

5 or more cups of flower.
Mix wet ingredients ( do not forget to mix in food coloring), then add flour. If 5 cups is not enough ( dough is still sticky add more until you like how dough feels.:)
IF dough gets to tough you have to add little bit water and then work dough for a while , since it takes a while water to absorb evenly :) GOOD LUCK :)

Regina had great Tuesday. I think school is starting to grow on her :) Seems like reading ( comprehension) is tiny bit problem for her. She reads story, but she forgets right away what she read about. I have lots of patience sitting on doctors offices, going to appointments, etc. BUT sadly, I have less patience when it comes to homework. For me it is hard to understand HOW COULD YOU NOT UNDERSTAND what you just read about... I know she will get it eventually, but I noticed, when I push her harder, she looses interest and shuts down completely. But when it comes to math, she is absolutely fine. She loves math. And she gets it.

Gabriel is doing awesome in school. No problems with him. Only problem with him is that he likes to play "smartass" ass annoy me with HIS rules. He tells me that he is smarter than everybody and he does not like to try hard. He will start screaming when he spells something wrong, and he thinks it is my fault since I do not know how to pronounce it right?? ( Yea, I have accent, BUT , not that bad....;) )

Monday, October 1


Thank you all for coming to Reginas Birthday :) Regina had tons off fun and was really happy that so many of her friends showed up :) THANK YOU AGAIN!! And thank you for all great gifts that you got for her :):):):) She loves everything :)

Today she is back in school. It is 9.28 AM and I have not heard from School yet. I am hoping that she can manage all day without any serious issues.... After School I have to take her to CHLA for labs. Last week Regina got new line in. Today , while I was flushing her line, I noticed that Her chest is little bit bruised.. I am not sure if that is normal or not, but I am trying to find it out today. I just hope that they do not have to pull her line....