Thursday, June 30

Udpate on us

Here we are . My husband left to China last night and 3 of us are alone once again. Kids started crying and wanted to go with him. Regina had really hard time letting him go. He just sat on stairs and cried. We explaned to her that daddy has to work, so we can keep all of our " toys"(house, cars, etc) . Regina told me that daddy has to bring him lots of puzzles for her and cars for gabriel. She also told him that he wants to go to china with daddy, because daddy is more fun than mommy :(
Right now I am all alone. Gabriel and Regina both are in school. Regina LOVES going to school. She wants to go every day but since Tutor Time is just wayyyy to expensive for 2 kids( full time), she only goes tuesdays and thursdays. I love their school. They learn so much, and summer camp program is awsome. They do lots of field trips and there is something new going on every day. :)

regina is also geting over her cold. Her runny nose is not runny again and her humongous cold sore is drying off and recovering. She ALWAYS gets huge coldsores when she gets sick.- always. Poor her. I was same way when I was kids. Before I even got really sick I got cold sores all over my lips- I still get them occasionaly.

2 months ago Regina was diagnosed with primary Hypothyroidism. If you want to know more about it go here
She is taking 25 mcg/d thyroid replacement meds daily. Meds are working, because she just had labs done week ago and her thyroid function is up to speed now. So we will keep her on this low dose of medication. We also have to take extra trip to St Jude in october to get her formal growth hormone testing done. I am not looking forward for this test at all. This test scares me. They have to get good IV on her,and then inject her with insulin . Here are some of the symptoms and brief explanation what may happen ( and probably will).

1. Extensive review of available clinical information has caused the endocrinology section to questioned the endocrine functions of your:

a. Growth Hormone

b. Cortisol

2. Optimal hormone management requires definitive testing to measure the hormone response to an intentional spell of low blood glucose (hypoglycemia). Refusing the testingto test, or relying on alternative testing, will complicate the medical management or lead to incompletely informed medical decisions.

3. The hypoglycemia testing results will be used forto:

a. Determine tThe best clinical management of the patient.

b. Specific research study:____________________________________________

4 a. The patient is expected to transiently experience:

a. Mild symptoms: hunger, headache, fatigue

b. Moderate symptoms: cold & clammy skin, pounding heart, tremulous

c. Severe symptoms: decreased alertness & responsiveness, sleepiness

5. 4b. The patient is not expected, buy may, to transiently experience:

a. Profound symptoms: Total unresponsiveness and/or , seizures , requiringement of supportive measures (including treatment with IV glucose

And here is the link that has some images and more information about this test.

I just hope that all goes well and she will not have any severe side effects. And hopefully they find out more about how Regina will grow and what problems we may run into. It is neverending battle. I really, really do hate cancer, I hate all the worries, I hate that she has to suffer time to time, I hate that she has to be on the meds, I hate that I can not forget some of the heartbraking events that happened in the past. But I LOVE her strenght and understanding about her own condition. She is one very strong and special person. In my surprise sometimes she even asks me if we could go to St Jude so she could play with some of her friends, but sad thing is- some of those good friends have passed away and some of them are in home loosing battles with cancer, And some of them are happy and healty. She often aske me about her friend Kailen. She lives in Luisiana with her mom and sister and is about Reginas age. They were the best friends in st Jude. Kailen was diagnosed with leukeemia( ALL) last year, she is still receiving chemo but they just wisit St jude once a month for couple of days for chemo and then they go back to Louisiana.

About me and my car- things are slowly moving and seems like maybe end of next week I get my sweet wheels back. There were some confusing incidents about 2 weeks ago. About 3 weeks ago I was told Liberty mutual was other partys insurance also, but about 7 days ago I was told they are not, Farmers is. So I called the farmers and asked will they cover my rental car for next 2 weeks and they sayed they will reinburse the money.

Then Farmers claims person told me that they HAVE not heard from Cassandra( girl who caused the accident) since the accident. They( cassandra) have not returned his calls or faxes, or letters etc. They even did not describe what happened on place of accident. So I have to give them my side of story what happened on place of accident.
Farmes guy told me that he told Liberty mutual to give me a call about week after the accident, but Liberty Mutual never mentioned it. That makes everything even more confusing.
Farmers insurance guy even came to my house to check out how we are doing and checked out the place of accident. :) I am really impressed.

So , my rental is covered, I got 400 dollars to cover my medical bills( chiropractor), and they update me daily and ask if there are more bills they can take care off . But since I have such a nice and not so demanding person , I had no bills. :lol

I think they want our business, that is why they are so freekin' nice. :lol

But I am still confused. Why liberty mutual lied to me about Cassandras insurance?? I called them, but as usual, my calls never get returned. So there you go. I think we will change our insurance after this freekin' drama is over.

Saturday, June 25

Bounce house- this is 11x11 bounce house. See how small is our Ca, Orange county , laguna niguel Back yard?? I can hardly strech my toes. hehe
Gabriel really enjoied this party. He used to be afride of water or water parks, but we was unstoppable. Running around like grazy and getting down and dirty with his " baby" slides. lol
Regina happy and ready to take Wild Rivers by storm :)
Today( 6.25.05 ) we were invited to Make A Wish party. Party was at the Wild Rivers water park. Gabriel and Regina have 22 month age differense and it was hard for all 4 of us( my dh included) to do something together. Gabriel wanted to to "baby" rides and run just run around, Regina wanted to do more extreme rides and rides that even I was afride to take. So my DH took Regina and I did Gabriel and then we switched, Dh was with Gabriel and Me with Regina, but of course no fun day goes without minor conflicts betwen involved partys- so today was no exeption. We had couple of minor disagreements but in the end, it was all fun and games. :) Thank you make a wish for making this party special for Orange county Wish kids :)
Friday we finally had Gabriels Birthday party I think he had lot of fun. he was exited about bounce house and playing with his friends and he was most exited about his presents. :) I want to thank you all of you who took time off from your busy daily schedule and helped to make this party so much fun for Gabriel. :) I made him Train cake, but since Gabriel does not like sweets, he did not taste my cake. :) I had fun decorating it and making it extra special for him and others :)

Tuesday, June 21

Happy Birthday Gabriel!!!!!!


We think that Regina got a little cold. She has stuffy nose and has try cough. She told me that she feels cold all the time. Usually when she feels cold , then fever is not that far away. Lets just hope that this cold will pass without any serious interuptions. She has been looking forward for Gabriels B day for 2 years now. Last year she was very upset when she heard that she has to be in St jude instead of here in CA with Gabriel. She was even more upset when she heard that Gabriel is not having big B day party. She has been helping me with menu selection for the party. She told me what SHE would like to eat and then she told me what Gabriel would enjoy. But she also mentioned what kind of B party SHE wants to have lol She is funny at times ;)

Cold cold, go away...

Friday, June 17

St Jude and scheduling

WHY they did it like this.
Today I called St jude and asked about Reginas august schedule. I TOLD THEM - before we left last time that we have only first week available to go there and I was told that yes, there are MRI spot available for her on that week. But today I was told that there is NO AVAILABLE spots until september.

So today they told me Reginas apointments start on August 10th. UGH. August 10th is very bad , very very bad time. I can not reveal why, but it is just not fitting into our chedule. So now they have next available MRI on last week of august. Very bad timing. Regina start Kindergarten on 24th of August and we have to be in St jude on 28th( I think). Ugh. Who sayed things can not get more stressful. :(

Thursday, June 16

Good thoughts/prayers Request.

I don't do it very often but now all the best thoughts are needed. One of our St Jude friend Claire is not doing very well. I got to meet her and her family while we were housed in Ronald McDonald HOuse, she was receiving radiation therapy same time as Regina.. Sadly she has one of the worst possible tumors- diffuse brainstem glioma- and treatments did not work. She was always happy and full of energy. Regina and her got a long really well- Claire is year older than Regina.

here is her diary

summer camp.

Regina has been pressuring me into taking her back to her old school- Tutor Time. ugh. So I finally gave in yesterday( after 3 months of saying NO to her) and signed her up for summer Camp twice a week, tuesdays and thursdays. SHe went exctatic, laughing and jumping and giving me kisses and hugs. lol She really is sick of me and sitting home all day long. lol So she will start on june 27th. There are lots of field trips on those tuesdays and thursdays and hopefully she will have fun time playing with her old friends and learning new things :)

Gabriel threw horrible fit this morning. Today they had to wear tutor time T shirts and blue jeans to school( matching day). So Yesterday we went to old navy and I allowed her to choose jeans he really liked. He was so exited trying on new jeans. So today we dressed up and I took her to shool. And then the fun started. He started screaming and telling me that his Jeans are biting her( huh?). He refused to walk into tutor time and I had to drag her into school. Then , after I signed him in, he ran out of the door again and started screaming again- I HATE MY JEANS, THEY ARE UGLY AND THEY ARE BITING ME. I DONT WANT TO GO TO SCHOOL. I never, ever heard such a ridiculos thing out of his mouth. I was on edge of loosing my patience and just leaving her there to scream. But I did not. I carried him to his classroom, pulled off his jeans and asked him to take his other pants and weare those( I geve in). So he still refused to move or talk to me. I used little force and dressed him up on his other pants. He finally calmed down, but remined very upset. His teacher saw the whole thing. Ms Teresa is the best teacher and Gabriel seems to listen to her very well in school. SO hopefully today Ms Teresa will give him another good lecture about jeans. lol
I just don't understand him . Why he does such a stupid things to get attention ? He gets plenty of attention from me, but he still has to act like HE is the only one in the world and everything has to be done his way. He really needs his dad now. My husband and him have some kind of special bond, so he will listen to him for sure.

Tuesday, June 14

Picture taken exactly year ago- minutes before we started our trip to airport, so we could catch our first flight to Memphis. :)


Sorry for lack of updates. Nothing interesting is happening. Kids are healty, Regina is taking her meds for thyroid function, because her thyroid is not up to speed. She finally learned art of swollowing pills and she is doing it really well :)

Gabriel is wicked little 4 year old ( his birthday is on june22). I really need my dh now , so he could do something about his missbehiving personality. HE does not listen to me at all most of the time he ends up sitting alone on the stairs on his time out zone and screaming his lungs out. I started to take his favorite things away, because if he does not listen to me, he does not diserve those toys/ foods. And if he has behaved well for an about hour he gets one of his things back. He is also very bad eater lately. When we go to restaurants he does really well about eating, but at home he will not stay still. Sometimes I feel like he is battery operated bunny, and has to hop until batteries run out.

Our cat is a monster. He bites everything that moves and I think it is thanks to Gabriel, because he just touchers our sweet little monster to much. he told me he loves kitty a lot and wants to spend as much time with kitty as possible.

My husband is still away, he will be home before Gabriels birthday. One more week and we will reunite again. I can not wait untill june 20th. There is so many things he has to do here- like fix my computer connections, change lightbulbs, because I am to lazy to do so, eat my cooking 3 times a day, 7 days a week. He told me that he hates chinese food and misses my gormet cooking most while being away. HUH??? What about kids anD MEEEEE??? lol He is a sweet guy:)

Friday, June 10

Lot of you have asked about Reginas hair . I post you a pic. 1/3 of her head is almost bold. And I really don't know when or IF it will grow back.

Thursday, June 9

I have to share this

Regina , do you have Penut??

Yes I do, but it was in my brain ( PNET)

Mommy, do I have a Peanut?

No , sweety, you have penis.

Mommy, Do you have a penis.

No , I don.t

Regina why do you have Penut and not penis.

We'll my brain does nol like penisis.

Mommy, what does Regina have?

What do you mean Gabriel?

Where is Reginas Penis.........???

I had to leave the room and laugh out loud. I did not want to embarass them by laughing out loud in front of them, but oh boy, what a conversation. Mystery of Penut, PNET and Penis is still unsolved and will continue after next bath in 2 days.
Dear Brother, I love you very much- But i have to floss your teeth.

Bad night

Regina really knows how to scare me to tears. Last night she started complaning little tummy pain. She asked for some medicine , which is weird, because she never asks for medicine. I told her to rest for a while which she did , and after while pain went away. Then around 12.30 at night, she woke up screaming . I started panicking because I had no idea what was going on. She told me her tummy hurts really really bad and she wants to go to the hospital so doctors can give her some medicine so pain will go away. I touched her tummy and it felt hard as a rock - poor girl was filled with gases and she could not pass them. To make things worse I did not have anything for gases at home for her. So I took my bean bag that I usually use for my neck, I mikrowaved it until it was nice and warm and applied it to her tummy, I also gave her some tylenol. While she was resting and crying, I started to pack my bags, BUT since I do my laundry once a week( thursdays), all our good clothes were dirty, so I went downstairs and started doing my laundry( 1.30 at night). When I arrived upstairs , after filling my washer with loundry , I managed to find some clothes and was ready to call my friend so I could drop gabriel off her place and take Regina to the hospital. But I guess warm beanbag and tylenol finally started working and she was peacefully resting. I massaged her tummy little more and finally ( cover her noses) she managed to pass some serious gases( on her sleep).

Today she is feeling better, at least she is telling me that. But I keep my suitcase packed incase Something happens tonight. :) PS .I finally fell asleep around 4 pm and had to wake up 6.30 pm becaue our cat managed to open our masterbedroom door and was jumping on and off the bed. UGH.

Monday, June 6

Just short update.

Everything is going great with us. Regina really is doing awsome and it is pleasure to see her playing and smiling. She slowly starts trusting people again. She is finally gettin her good manners back like saying Hallo, and good buy. And she is more willing to talk to adults now. :)

She feels little bored during daytime because Gabriel is not home and she can not boss anyone around. She likes to play with our kitty, but she gets mad when kitty starts playing with her clothes and does not let her eat. Gabriel on the other hand will carry kitty up and down the stairs, he will make sure kitty has something to eat all the time and he throws horrible tantrums when cat runs away from him and hides, because Gabriel wants to play rough with him. lol. You should see him carry cat around. lol it is the funniest things ever, and cat lets him to do whatever he wants( most of the time).

As far as my car goes then things are slowly moving again. It is finally in repear shop and we will see how things will go from here. I started one blog for myself where I just write about my issues with world and people. DOn't look if you get easily offended, I will write there about everything and anything that pisses me off OR makes me happy

Saturday, June 4

This picture is taken last year, 4 days after her brain surgery. Sweet and happy her. :)

It is PNET..

Year ago today we were told That Regina has PNET. And it is malignant. Neurosurgeon, who performed Reginas Surgery, came in to see us after we found out. He tried to make us feel better by telling us If he'd ever have malignant brain tumor, he'd rather have this one. It did make me feel better to know that there was hope but those letter meant nothing to me. What the heck is PNET? How did she get it, will she survive, how bad is it, what are the treatment options etc.

At that time we were given only one option and we were told that IF we don't do anything RIGHT NOW, it will start growing back soon. Oncologist is CHOC , scared the shit out of me. HE was brutal and his English was horrible. Option was to do some Chemo, and Radiatin therapy( full brain and spine), and more chemo and even the survival chances are very slim( about 40%).

But thanks to, we found some great people, organizations who directed us to St Jude. You know who you are-- BIG THANK YOU !!!!
We also spoke couple of families whose kids were treated in CHOC( Childrens Hospital of Orange county) and they were very pleased with treatments in here.
But I just had that Mothers Intuition that sayed- YOU HAVE TO TAKE REGINA TO ST JUDE. And we all are so happy that we made that desision and it worked out great for Regina.

Let's eat some reginas favorite cake today- chocolate cake with chocolate mousse between the layers and topped with light chocolate whipped cream and frosting flowers in the middle :)

Yes, she is chocoholic....

Friday, June 3


I took Gabriel and Regina to annual dental check up. Regina did really well. She has one cavity and it has to be fixed. BUT Gabriel- he refused to sit on x-ray chair, he refused to open his mouth, he refused to do anything at all in there. He started screaming when dentis( young pretty female ) aproached him. lol. HEHEh It was funnny and frustrating same time. Silly Gabriel.

Regina also got couple of single use princess flosses and now all she does is floss. I told her to stop flossing but she told me that she has to get all the junk off between her teeth. lol

As my car- I still don't know what is going on. Insurance( local office) is investigating now why it takes so much time to get my car checked out and why things are not moving anywhere. WHY I always have to deal with total airheads and morons. Do I carry a sign with me that sayes MRS Give Me Amateurs....

Wednesday, June 1

She is super backer - she only had one suitcase and one sport bag and one carry-on bag.
By-by Sija. Kids are giving sija big hugs before she steps out and starts her journey back to her home. :)