Friday, September 28
- Cupcakes baked
- 2 cakes made and decorated
- Mini hamburgers done
- Shnitchels done
- 4 loaves of bread cut with cookie cutters
- Blue cheese walnut terrine- done
- macaroni salad- almost done
- scones -done, but not perfect.
- cucumbers cut into flower shapes
- Sour kraut slow cooked!!!!
- Meet marinated
- Goody bags filled ( almost, sandra, waiting for your "stuff") with help from Regina
- Table ready
- KIDS ROOMS NOT CLEANED
- KITCHEN NOT CLEANED
- I FORGOT TO ORDER pink and green and blue balloons :(
- I forgot to buy extra ice cream
- I forgot to buy pears and strawberries :(
- I need extra Ice
- I need few more drinks for kids
- craft tables ready for kids to use
- I forgot to buy sharpies for foil art
- I still have to make cream cheese spread for salmon rolls
- I still have to bake mini cinnamon rolls
- I still have to bake italian sausage pirogies
- Salad tomorrow
- childrens sandwitches tomorrow
AND... MOre things to do... OH, I also made 4 different colors of play dough - non toxic, eatable, BUT VERY SALTY.... and if some of you remember to take couple of play dough cutters or rollers.. etc. I'd appreciate it.. I do not have any playdough toys :(
OK. IT is 9.52 and this is first time today I Am sitting down ( well, I woke up 6 am and took kids to school.....and did some shopping... But car drive sitting really does not count...lol
I also took Regina to school today. Around 10 am I got a call from School. REGINA complains headache and is dizzy... REALLY....??? DizZY?? In a weird way only time she complains dizziness when she is in school. I do not get it. She gets chemo and is fine, She takes YUCKY medicine - She is ok, She goes to school- SHE GETS DIZZY??? HUH??? WHAT am I missing here. I sense somebody just does not like school very much. I told her today- NEXT time she complains dizziness I WILL NOT PICK HER UP FROM SCHOOL. NO WAY, never, sorry, . She started crying- HER WAY OUT --- OF COURSE....
I WILL not pick her up from school I do not care how dizzy she feels. Only time I will pick her up is when she has fever or throws up.!!!! AND tummy pain- NORMAL, due her meds. NOthing serious. Oh REgina , Regina , REgina... Why everything has to be so complicated..
If you think my dh made it easy for her at home , you are wrong. SHE had to do her school work from 10 am till 2.10. OH, she was pissed. She thought she could play and watch TV,- But instead she was stuck doing reading, math and reading, and math, and more reading.......
See you all tomorrow. party is on.!!!!!
Thursday, September 27
Today was third, but not last day of stem cell harvest. Dr Dhall wants to do one more harvest after next outpatient chemo round. Yesterdays harvest was not very successful :( Today I left. Nick came to hospital to give me night off- well, afternoon off....
I swear- I have not done anything, but I am so drained- emotionally drained..
I also went to Open house in Gabriel and Reginas school. SInce Regina really has not attended school this year :(, I did not pay visit to her class. I should have... I visited Gabriels classroom because I wanted to see how Gabe is doing. I think he is doing pretty awesome for a first grader. He HAS to work more on his writing skills. I was surprised to see his drawings in his journal. I had no idea that he drew suh great pictures
Also, Nick and Regina showed up kind of unexpectedly.. Honestly- I wanted this night for me...( how selfish huh???) But oh well, they are home now.. I just did not want to deal with any drama tonight because of my very high stress level... But sadly time to time other half does not understand little clues here and there....
And most important- THANK YOU FOR ALL THE BIRTHDAY WISHES AND cute gifts :) Regina is very thankful for everything.:0)
Also thank you to all of you who have donated to Reginas fund:) I am sure you know exactly, how much your donations mean to us :):):):)
Wednesday, September 26
Oh mu gosh.. what a day Tuesday was. It started around 6 am for me- shower. 7.30 hospital. And then when things went kind of cucu..
I see it this way. Hospital is emotionally exhausting for us parents and care givers, but it is physically exhausting for our kids. DR Phil , we need your help.
Today ( Wednesday). We are doing pretty much same thing. Sitting her for few hours while her stem cells get collected and then , couple of more hours waiting for labs.
Reginas ANC is doing AWESOME!! On Friday it was zero- yesterday it was 5500, Today it must be 7000 something…
See you on Saturday.
My cell is (949)290 6958
Monday, September 24
So, we go to hospital 7.30 to get labs done. ANC IS UP!!!!! 2500!!!! Not bad. Friday zero and monday 2500!! BUT platelets were all time LOW. 27 000. She never had them that low. So we waited until they got platelets up from blood bank...
Our troubles started after that. As we found out Surgery had NO idea that Regina was supposed to have Double Hickman put in today. It is a surgical procedure and she had to take " sleepy medicine". We waited until 2 pm before they straightened things out and squeezed regina into their tight schedule. I was so done waiting. REgina was done waiting. She was tired, hungry and wanted to leave. But sadly she had no choice. We had to wait.
Now her double hickman is in, her Picc is in and she is all "Lined up". It is 5.30 PM now and she is having her first bite of food.
Also Bone marrow Transplant team drew some blood to check something something to see if her stem cell count is high, but sadly it is not . But they still want to try to harvest her stem cells tomorrow and Wednesday. UGH... I asked why can't we wait until her ANC gets really high. Dr Dhall told me that they want to get it while her ANC is boosting up, ..
Right now I AM TIRed. I am so tired to even think how to explain things better. I am just F)()*)()(&(*)&*&^%*&%^&* tired of waiting. TIred of things not done right, tired to see all sick kids. I can not wait till friday evening. At least then I can start prepping for Reginas Party, and I get some rest. Some good old creative rest. ...
Share the world about Reginas fund. If you know individuals or companies who would like to help Regina Financially. Please forward them her FUnd.
ALSO Reginas Party is on SATURDAY 09/29/07 From 3 pm till 7 something something. Grown ups or other "ups" who are not like big crowds of kids are welcome to come over around7 pm for cocktails and clean up..;) PLEASE no blush toys, no teddy bears and other soft items( High school musical and hanna montana pillows are ok lol ( halloween stuff is welcome ;) ) lol But you do not have to bring a present to her. :) Just a card and high five will do a thing :)
AND PLEASE GO TO CHILIS TODAY!!! IT IS THEIR ANNUAL ALL PROFITS GO TO ST JUDE NIGHT ( 09/24)
Sunday, September 23
Big thanks to Talbert Family Foundation for setting it up for us :):):)
You can send out that blast e-mail now telling folks they can donate online or with a downloadable mailable form. Remember if anyone donates on a credit card, the bank takes 3% from that donation for their fees.
Friday, September 21
bohooOO. Anc is 0 still zero, zero zero bohoooohoho. Me not like it. Me not happy. Me want out of here... But we have to continue G CSF shots. And most likely she will not have hickman line procedure on monday. Most likely she will not have her stem cell collected on tuesday and wednesday and MosT likely she still may spike a fever and my fear right now is IT WILL HAPPEN just day before her birthday. UGH. I hate it. I can not preorder any foods ( I wanted to get this party catered by Texas BBQ, but now I am sure I will make everything myself.
Kids menu will be very simple. Regina told me what to do.
- Heart shaped cucumber sandwiches
- Fresh strawberries and blueberries
- Mini hot dogs wit ketchup.
- mini hamburgers ( she loves my tiny estonian style burgers)
- Mini cinnamon rolls
- Chicken and stars soup( I am not sure How I am going to pull of that .)
- Hello Kitty Ice Cream cake
- Carrots for kids who like carrots,
- And lots and lots of cucumber because she just likes cucumber.
- Sorry to those who are hoping to get pizza. No pizza for you. You may bring your own pizza OR we are going to make our own pizza.
So that is it. For grow ups it will be something seafoody.. and staky ( are those even a words????)
OK that's it. We are going to stay to LA for a weekend just because I want to.
Wednesday, September 19
I hope Regina does not hate me rest of my life...lol I did not get her any toys. I got her Few clothes with Hello Kitty and sleeping beauty stuff.. Honestly she was very exited. She started trying them on right away and gave me fashion show. Lately she has done lot of " modelin" and model walking around the house. She looks very serious while she does it.:) Today we are going to hospital for labs. I AM HOPING HER ANC IS ALL ready starting to come up. If yes, then I want to drive home today and take her to CHilis to eat.
BTW. GO to chilis on 24th of september. It is their annual ST JUDE fundrising event. All profits will go to ST JUDE.
I think Nick will take Gabriel there, but sadly Regina and I have to stay to hospital because she will have procedure that they ( picc line out, Double Hickman in)
ONCE AGAIN HAPPY BIRTHDAY TO MY ROCK!!!!
Monday, September 17
of sponge bob and other tv characters That make no sense to me. :)
So now we have to isolate Regina from OTHER people. The worst part is elevators. When her counts are low I DO not like going to elevators with 10 other people. Even if I mention sometimes to people not to enter because she is neutropenic and blah blah blah.. they look at me like I am lunatic and march into elevator anyway.. ( but of course there are people who smile and tell me of course, we understand completely. :) Thanks for those nice people :).
Reginas birthday is on 19th of sept ( wednesday) we have labs. Most likely she needs more platelets... SO PLEASE COME TO CHLA AND DONATE. WE ARE IN NEED HERE...
NOTE to Kathy--- stop scaring my friends with your horror stories.... ;)
Note to Maire- I got your message... but sadly I did not take cell charger with me and my phones battery died... But you guys are awesome ;)
Not to other good friends and strangers - See you on 29th of September is our house.... :) Email me if you are coming. I know I did not evite lot of you, because I simply do not have your emails, but like I mentioned we have open house from 3 pm till 7 pmish... and after that all grown ups who have no kids or do not want to hang out with bunch of hello kitty, barbie and hight school musical themed stuff -- ARE WELCOME TO HAVE few drinks with us ... UNTIL you feel is right to leave..
Also we will be decorating cupcakes, and cookies and cluing stuff and just messing up my perfectly unorganized house..
PS:Also, some of you have asked how you can help with party---- OK. I DO NOT want you to go shopping- I know most of you have some arts crafts stuff at home, poster paints, acrylic paints, clay paints, brushes- anything what you have not been using and been wondering WHAT THE HECK I AM GOING TO DO WITH THIS - please take with you . I know most of kids enjoy doing things with others, so there's your chance to get rid of some of the junk.
Also- if you have some closed boxes of toys, crafts, unused new clothes for kids with tags on, and you have no idea what to do with them... PLEASE TAKE THOSE WITH YOU ALSO. I would like to take those things to Ronald McDonald house and share it with those who might need them :) BUt again, you do not have to do so. Just something to think about. :):):)
Friday, September 14
Monday we have to go back to labs again.
On 24th she will ahve picc line pulled out and double hickman put in, On 25th they want to harvest her stem cells and on 9th she will have MRI with contrast.
dancing with Tony video.
Thursday, September 13
Tuesday, September 11
Reginas counts are slowly declining and in about 5 days she will need platelets.
Reginas blood type is B positive. And it only matter when donating blood. It does not matter what type you have when you donate platelets.
I also add you a link with CHLA blood donor center.
Following information is from Eric David's MySpace page. Hope it helps you to understand why donating is so important.
These bad boys are in charge of blood clotting. Doctors need these for open heart surgery, to support cancer therapy, treatment of blood disorders, and for organ transplants. Platelets must also be transfuses (used in one of the above examples) in 5 days. It has a short shelf life, so the suply must always be replenished. A single donor can donate platelets up to 24 times per year. Any more then that amont is generally not recommended.
Red Blood Cells:
As you know from medical school (or maybe grades school that red blood cells carry oxygen to all parts of the body. Typically they are most needed after a loss of blood through trauma, surgery or anemia. These too have a shelf life of 5 days, so the need for donors is constant. This donation can be made about every 8-16 weeks, depending on the donation type.
This is the liquid part of the blood, and it contains critical clotting factors. Plasma generally treats patients with certain bleeding disorders and is used for plasma exchanges. Plasma can be given up to twice a week or even every 4 weeks for some programs. Check with a local bank for their specific plasma donation program.
How much blood does one of these medical procedures take?
This is where the data gets real interesting. Check this out:
So everytime you donate blood you would get:
1 red blood cell unit
1 unit of platelet
1 unit of plasma
…follow me? So here is how many each takes:
- up to 50 Units of Red Blood Cells
Organ Transplant Recipient- up to 40 units of RBC
- 30 of Platelet
- 25 of Plasma
Bone Marrow Transplant Recipient
- 20 of RBC
-120 of Platelets!
-up to 8 units of Platelets every week!
Heart Surgery Patient
-6 of RBC
-6 of Platelets
Sickle Cell Anemia Patient
up to 4 units of Red Blood Cells per treatment.
…whoa! now you know Why blood donation is so important!
The best moment of the night happened when Tony The Tiger showed up... ALl orange, stripy and crisp ;) Regina was EXITED, and happy to see him.. She was Tony's heart. Regina was dancing with Tony, giving him hugs, playing games, laughing like I never seen her laugh before. TONY was worn out... lol Other kids were kind of shy and just wanted to take pictures, but Regina just kept bugging TOny until tony left ( hour later)... I wish I had pics for you, BUT I forgot to take transfer cord with me.. Pictures later... ANYWAY, just picture laughing Regina and Giant tiger having fun.... You'll laugh too. :)
RIGHT now we are just waiting her in RMD house. Pharmacy did not have her meds yesterday, so we have to WAIT until 12 to get them... LAst night we had to wait in hospital for 6 hours for reginas chemo drugs BECAUSE NOBODY FAXED reginas prescription to pharmacy. I was so mad- I WENT back to 4th floor, and raised my voice... OMG. I never seen people so busy on 4th floor... FInally just after 5 minutes of phonecalls they got Reginas prescription to pharmacy and I got my meds... BUT WTF??? WHY was it so hard for them to do it 12 pm?? HUH?? WHy they did not make those phonecalls then???? MORE frustration.....
Monday, September 10
now.. SCABIES!!!! NO she does not have it, but hospital had scabies outbreak and everybody who was hospitalized in august has to go home with creams and medications. YUCK YUCK YUCK... YUCK YUCK.. I hate body bugs....
Now we are waiting to get discharged from this crazy house..
OH... I saw dr Finaly today. He is VERY, VERY VERY impressed what is going on with Regina and it is happening so fast . They were not expecting such a fast response from tumors. :):):) They better start working fast to work on our next step... :)
Saturday, September 8
After this round she will get LARGE volume of GCSF( Filgastrim) to boost her white blood count, so we can harvest some stem cells. After that boost she will get Double Hickman line to harvest those cells and what comes next is kind of hazy... we just have to wait and see.
Saturday, sunday in hospital, Monday we will be here until 1 pm( I am guessing). and then we will come here every other day for labs. YAWN...
Since Reginas stem cells has to be rescued and there are other un knows things about her future, I am not sure what day we will have her birthday. IF we happen to be home on sept 29th, we will have her party for sure. Just stay tuned-- AND we will have her party from 3 PM till 7 PM , OR until all you crazy party people have energy to listen to hight school musical stuff...lol
ALSO her Real birthday is on Sept, 19th. BUT since her counts will be low and we will be inpatients MOSt likely, we will not have party then. IF you happen to be in area and we are in LA, give us a call and let us know that you are coming to see REgina...
My cell no is (949) 290 6958
Reginas Address is
27715 Manor Hill rd
I asked what she wants for Birthday-
Her wish list.
Barbie as The Island Princess stuff- accessories, toys, games, clothes whatever ( not a big fan myself)
High School MUSICAL accessories ( pillowcases, sheets, pillows, clothes, decor items )
Gift cards to Toys R us, Children's place, Old Navy, Build a bear, book store gift cards, Disney store stuff, clothes... ( She has tons of princesses and barbies,)
HELLO KITTY stuff( please no more notebooks, or pens and pencils... I think she has about thousand pencils ...lol
Chilis Restaurant Gift cards ( her favorite restaurant In whole wide world).
Regina wears size 6 or 6x and her favorite color is DARK pink and red.
ANyway, these are just some suggestions, but seriously, she is second grader now,and I want her to start realizing that. Barbies are fun, BUT enough is enough. It is time to start growing up ;) lol
Friday, September 7
Because of no bed availability , Reginas chemo is postponed till tomorrow.. Regina and I had to check into RMD house today, and that is why we are in LA. IF we did not check in today, they would have given our room away to other family on list and we were put on waiting list again...
Wednesday, September 5
WOHOOO!!! YEs, REGINAS TUMORs ARE SHRINKING. A LOT.
Today Dr Dhall showed me all her scans since may, and WOW. White matter that was full of tumor cells ( those 39 something tumors) is almost gone. Only little more is left. There are still few tumors left in her brain, but doctors are getting more and more exited about cure and bone marrow transplant.
We are starting chemo on friday. do not ask why, because you know why... ;)
BUT 14-17 days after chemo Regina needs Double Hickman line , her stem cells needs to be harvested ( first Dr Dhall is checking with St jude, if they have saved some). Dr Dhall told me that Dr gajjar will NOT be very exited to hear about ANOTHER bone marrow transplant... but oh well... ....
Anyway. IF they can not harvest Reginas Stem cells, THEN we have to look into bone marrow Registry to find a mach... That part is not fun...
So all of you find your local bone marrow place and get yourself into system... Start saving lives.
ALSO.. After this round we are done with inpatient chemo and start oral chemo and outpatient chemo and have to have at least 2-3 stem cell transplant rounds.... BUT again,, nothing is 100% sure Things can change, plans can change, new drugs may POP UP, miracle is allready happening so there you go..... So NOW I am starting to let Regina plan her Halloween and christmas etc... OH WOW... These upcoming 3 months sound very exhausting .. Not sure how everything will go, but we are very , very exited about it!
Monday, September 3
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....
Sunday, September 2
... 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 :)
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.
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)|