Back home :)

We are home now. Gabriel has weird rash on his body. He gets it when he drinks milk, or orange juice or eats bananas. It is weird. I hope it is not infectios. Regina is not feeling very well eater. She threw up again and seems down . her gums are red and swollen and she has no apetite. She still playes but is not herself. I think she got some kind of virus from St Jude. I saw a lot of kids really sick and not wearing masks. What happened with green mask rule??? Coughing, runny noses, fevers- did parents have not any idea what one sick infectios kids can do to hundreds with zero ANC. But who am I to tell??????

Top 10 most frequently asked questions in St Jude.



How are you?-Great
How is Regina doing?- Great
Does Reginas hair grow back already?- look and see
For how long will you be staying this time?-For a week
Did she relapse, that is why you are back?- Now she did not, we are here for a check-up.
What kind of meds is she on now?- None, she is medicine free
Does she have her central line still on?- Nope
How old is she-5and half
Did you made her pink little hat?- No I did not, I bought it when she was about 9 months old. I bought it from Gap.
Did you have fun at home?- We sure did.

I really did not mind answering these questions, but I got little tired telling the same thing over and over again. Why nobody asked what is her favorite food now, and how is she physically doing( Dr Gajjar did ask that), etc. ? Maybe next time. Lol

Our first 3 month check up is over. It was nice to being “ back” and visiting with Doctors and nurses. I feel bad that I did not take time to visit B clinic, because Reginas favorite nurse practitioner Kathy was probably wondering why we did not step in. Sorry Kathy. Every time we had time to go over there Regina was ether ready to nap or drugged up. L Better luck next time.
Many more appointments to come, and many more questions to be answered.

Di

Faces of brain tumor

I give you one link where you find lot of stories with kids and adults with brain tumors.
Plese scroll down the page and click to ALABAMA- COLORADO. Regina should be on page 41( california). Also take time to read other kids stories. :)

http://nabraintumor.org/faces.html

Thursday- U P D A T E

Dr Gajjar just told me that REginas scans were good :):):):):):)
Regina is still sleeping. This time anestesia really wore her off :) SHe opens her eyes once in a while and tells me that She is really sleepy today. And she is great sleeper, and sleeping makes her feel good :) lol

Next time we will fly over to St Jude 1st and 2nd August :)


Right now, as I am typing this, Regina is in MRI room getting her MRI's for brain and spine. :)
She had to get poked twice, because first time her line did not flush, they had to take her IV line out and poke her once more. She did really great. Thank you Ms H for being so nice and caring. :)
Yesterday she had functional MRI where she stayed awake and very very still. Which she did. I was told that they have not seen 5 year old that still yet( not even her nerves moved)/ lol.

After her functional MRI we went to Target house where was Purina sponsored Incredible dog show. It was good one, but Regina kept telling me that these dogs are way to big. She rather wathc small dog show. hehe. Then she played with other kids on Target house playset and was upset when I told her it is time to leave.
She did not eat dinner, because it was Lasagna. When we returned to Target house around 7.30pm, she still told me that she is not hungry. Around 8.30. I told her to go to sleep , but she started crying and told me that she has not played her gameboy yet. I sayed it is to late and she did not eat her dinner, so It is time to go to sleep. Then suddenly she was very hungry. She ate banana and whole box of strawberry cereal( single serving one). And she forgot all about her gameboy and fell asleep. :)

Wednesday.

Sorry for not updating yesterday. We had not that busy day, but I was little lazy . Yesterday Regina had Speech check up. They found it strange that she has 3 different ways pronouncing TH sounds. But other than that she is doing fine. Then she had another 2,5 hour Psych testing. She did OK. Not as well as 3 months ago, but well. She was much slower and did not think as hard as she was supposed to. So that took a lot of points off.

Then there was somebody doing sandwich buffe for grizzly house families. It was nice. Even Regina had some "turkey", well, it was really smoked ham but don't tell her that.

Now it is 12.46 and we are waiting 2.45 to arrive because then she will have her first MRI( funcitonal one). Tomorrow she will have sedated spine and brain MRI.

We are Here!

Yep! Back in St Jude. Flight was great. In Memphis we were stuck in airplain for 15 extra minutes, because door did not open. SO finally when doors opened and people started rushing out, we were stuck on our chairs, because the guy who was sitting on Isle seat just refused to let us go( I guess he had some issues). During the flight he made a huge deal out of off us making him stand up , because we HAD to use restroom. SOME people.

Today Regina had psych testing. 2,5 hours. SHe did ok. Not as well as first time IMO. Because she just refused to answer lot of the questions like 2+2 and 2-1. SHe just sayed IT IS TO MUCH FOR ME. I want to leave now. lol. Guy who was doing the testing told us that she did pretty well for her age group. TOmorrow we have another 3 hours with him. We will see then how well she does.

MRI's are on Wednesday 2.45 PM
and Thursday around 8 AM. Until then we just do some smaller tests like Endocrine, and speech and O/T and A/T .

IT has been really nice meeting all the other families who happen to be here same time for check ups :) Best of luck to them :)

Snow, sunshine and mountains....

Happy Birthday to My mom DOB 04/22/54

Back from Palm Springs.

We had a lot of fun. Palm Springs is absolutely beautfiul right now , at this time of year. 2 days we were there, weather was really beautiful. Nice and sunny. The highest was 99 degrees- I think. First day we went to Indian Canyons-Palm Canyon, Andreas Canyon and Murray canyon. The sceenery is beautiful , breathtaking. We did lot of walking and took lots of pictures, but there is something wrong with my camera and lot of the good shots have pinkish sky or glow to them.

On Thursday we did a l o t of walking. To much , I think. At firs we Took the 15 minutes ride with worlds largest rotating tramcars at the Palm Springs Aerial Tramway from bottom of the hill to the top of the hill. Again, the view we had from the tram, and from the top of the mountains were breathtaking. It was so peaceful and calming. Nature, snow, trees- hiking trails and we hikers. My soul was feed. :)

Then, after 3 hours in mountains we went to Living Desert ZOo and Gardens. WOW, botanical Gardens were in full bloom. It was different kind of good experiense under hot desert sun. Cactuses, butterflies, wild cats, giraffes- all together, under one roof. lol. Within its 1200 acres youwill discover over 450 desert animals and more than 150 species including coyotes, oryx, zebras etc. It was really beautiful.

We were soooo tired in the end of the day that even coffee did not keep my husband awake. He fell asleep while drinking his hot starbucks. hehe

We had made plans to go out and eat Las Casuelas Terraza, because on the previous night we went out and had margaritas there( thank you Kathy for recommending that place) My husband , who hates hates hates coctails had one of their strongest margarita was changed man after drinking it. So we went to go eat there , but we had no idea that on thursdays there are these HUGE street fares with HUGE mass of people and the traffic is pretty much shot down and there is nowhere to park. So instead of Las Casuelas we went to Casino close buy and their food was ok.
Now we are back home, tired, but happy and I am extremely glad that we did this trip before our St Jude trip. I feel more positive and energized and happy. Now let s hope that ST jude provides us with the happiest news possible and the time there will fly by as fast as possible. :)

Pictures will be added later- I have to do some serious editing to get the pink glow out of the pics. :)

D

Ready to relax????

Who wants to join us??? Tomorrow morning we are headed to Palm Springs. We will stay to Ranco Las Palmas- resort and spa( Marriot). It is 2 miles from city /downtown Palm Springs. We hope to have some much needed fun and cleanse our minds before Big ST Jude trip.
http://marriott.com/property/propertypage/PSPCA

Regina is on Antibiotics to get rid of her herpes virus, and seems like she is healing very well. I also dropped off Reginas kindergarten registration papers , which means in fall Regina will start kindergarten. I am exited and worried same time. I don't know how will she do , or how she will get used to group activities again. She is spoiled to rotten by me and I think school for her will be tough at first. As she sayes- We will see!!!

But now I have to pack my bags and head to LALa land. Good night to you all. Tomorrow is another day and we dont' know what it brings with it. Hopefully better weather and lots of smiles and good laughs.:)

-IKEA-

17,18,19,20,21,22,23,AND..

24tth of April--Can you count how many days left , before we fly to Memphis to Reginas FIRST 3 month check up? I am starting to get nervous and restless and stressed and all the things I don’t want to be feeling. Last year this time tumor was already present. I am not expert but I am looking her past pictures and I see how pale she was. She did appear little more tired and she felt very, very cold. I remember her teachers in school told me that She took longer naps and was very irritable and sad often. L I remember her school had this week- they have it every year, parents go and volunteer in the classes where their kids are. I Also went there and spent couple of hours playing with kids, reading books and just acting like kid herself, and that whole time I was thinking , Why Regina acted so tired and slow and sad . Little did I know. Week later ,( around -25 or 26th of april) I got a call from school. Regina threw up . They told me they were doing just some activities and she was on her way to the restroom after lunch , and out of blue she just started vomiting. When I picked her up , she was lying down in assistant Directors room floor, where they made her little resting place with pillows, mattress and blankets. When I picked her up she looked happy little girl , she gave me big hug and told me she loved me. I took her home and had to stay home for 48 hours( 2 days). 2 days no vomiting- then , the morning I was getting her ready to take her back to her TutorTime preschool , and she threw up again. There was stomack flu circling around in Tutor time...
….. Stay tuned for more….

Regina and Herpes( on her face)

• 3 days ago she had fever 101,6.
• Fever triggered her herpes plugs
• Now her cheeks, lip, chin is covered with big red bubbly patches.

One more thing to take care off. Again, I called her doctor and waiting his directions what should we do next to prevent it spreading to her hands and arms( she had couple or pretty bad herpes HSV I infections in Memphis. Now it is back.

DIana

Gabriel has lost his mind. " Mommy, one day I will be boy-girl, RIGHT???" HUH, he thinks he is princess Erica. And Regina is like - yeah, Gabriel- YOu are very pretty girl. I LOVE YOUR DRESS. lol. Regina loves layering clothes. She will wear her long sleeve shirt, short sleeve shirt, pantyhose, pants and S K I R T. lol. of course time to time she will wear knee highs also. She definitely has her own style, and I can do nothing to change it. I don't want make her unhappy by telling her what she has to wear. People tend to like her style a lot, and she gets lots of comments from strangers - oh, I love your skirt and boots, or your hat and pants are really matching well- lol kids.....

Get well vibes needed.

Regina woke up from her nap with 101.6 fever. She has been very weak today and not feeling very well. Please hope it is nothing very serious. SHe did complain that her upper chest( right side) hurts. But with recent limpings and other problems I don't know what to think or what really is going on with her. She probably cought cold yesterday while she and her dad went swimming. It was little windy.

This is US on Saturday afternoon before Going to Wiggles concert in Universal Amphitheater/ :) Concert was lot of fun. Regina was dancing and enjoying every m inute of it. Gabriel was little shy because he was not to happy about that huge crowd that showed up( about 6000 people). But he was ok with it :)

Today was absolutley beautiful day :) Sun was bright and warm, birds were singing and lizzards were taking over our backyard. After I picked Gabriel home from School, kids wanted to bike . So first time this year they took theyr bikes out to frontyard and biked about 30 minutes. Then it was my guitar lessons time and while I was in class, kids spent some fun time with daddy in the Mission Viejo mall :)

Regina, Heather and Gabriel after Trike A Thon. We want to thank all of you who chipped in and helped Gabriel raise money for St Jude. Trike a thon was fun and even Regina got a chance to trike around :) . Gabriel was triking all the round thumb in his mouth. lol. He is not a thumb sucker- he has never been thumbsucker. :lol Director Dan ( tutor Time) made a joke, that Gabriel is on his Cell, because he was veeeeery slow..... ;)

Wiggles and more...

Today we went to see Wiggles in Universal City. Wiggles was fun. It was funny and cute, and most importantly Regina Enjoyed it a lot. She danced and sang songs and was overall happy :) Thank you Make a Wish for Giving Regina and us oportunity to See Wiggles Live :) Gabriel had fun also, but he does not like big crowds( yeah- about 4000-6000 people), and lot of people screaming and yelling scare him a " little.

After Wiggles we went to our friends B party somewhere in San Gabriel(CA). Dinner was held in some chinese restaurant. Food was ok, but what ruined everything was - Birthday Girl found a Band Aid in her soup. After that we payed for our meals and left the place. Mood for me was ruined with that. I also had bowl of that soup- but before she found bandaid. Anyway- BOOOOOOOOO. Then we went to one asian Tea house where we ate birthday cake and drank some excellent tea, but waiter kind of screwed up our orders. Instead of Hot plum tea I got iced and then hot plum tea arrived and couple of minutes later another pot of Hot plum tea- lol - doubble order just for me. Tea was the best and cake was just right - if you ever ordered B cakes from Asian bakeryes, then you know that those cakes taste p e r f e c t l y right- not toooo sweet- just the way I like it. :) Everything is in right balance. Now we are home and ready to hit the bed. But the thought of eating soup made with USED bandaid makes me g*a*g.
Bon Apetit!!!

Our Schedule

Take a peak of our schedule
24 apr NW 116 depart OC 7:45 am
Northwest arrive: Minneapolis/stpaul 1:22 pm

Nw 558 Depart minneapolis/st paul 3:16PM
arrive: Memphis 5:15 PM


April 25th: 9am-12PM - Psych Testing

April 26, 2005:
08:45-09.00 Assessment and Triage
09.15-10.15 Endocrine Clinic Consult visit
11.30-12.00 Speech Consult
12.30-03.30 Psych Test part 2

April 27th
02;45-04.30 MRI Brain SJMB03 Funcitonal MRI

April 28th
07;45-09.00 MRI with IV sedation

09.00 MRI brain and spine with sedation
10.45-11-45 Sedation Recovery
12.30 No off Therapy

april 29th

08.30-09.30 Procedure( LUmbar puncture)

April 30th Time to fly back to CA.

I am not very grazy about our schedule. I wish we could fly back on 29th afternoon insetad of 30th. But oh well, Now I know with what I have to work with our future apointments.

Busy days..

My husband is finally home and sleeping most of the time. lol. Kids don't want to let him out of sight. Regina refused to let him go to gym yesterday.

Anyway, now he will stay here until may 10th. He will stay until my birthday and then he will take off until Gabriels birthday in June.

I want to thank you for helping Gabriel and I raise money for St Jude. You know who you are ;) Remember 2 More days before I have to turn checks in. :) HURRY!!!! lol

Something really cool happened couple of days ago. Make a wish called and asked if Regina was interested in Wiggles. And since she is, we got 4 tickets to go to see Wiggles on Univeral Amphitheater on Saturday , april 9th 5 pm. I AM SO EXITED. SHE IS EXITED- EVERYBODY be exited with us. Tomorrow , after I finish with my parent hour in Gabriels Daycare, I will go out and buy us something Wigglish- so when we go to see wiggles on Saturday, we feel more festive. :lol ( I am going nuts, right???). When Regina heard that she has chace to go to sees wiggles , she ran upstairs and got her wiggles underwear - lol. Today we went to Make a Wish offices and I got the tickets. They have fancy office. Very nice and very busy and very clean and professional. lol.

OH, And yesterday We ( my DHand I ) we went out for dinner and movie, We ate On THe Border( mexican restaurante), and then saw Miss Conginiality 2. Movie sucked big time. I was expecting something better, but I did not get what I expected. I hated that Benjamin bratt did not play in this one. And Sandra Bulloc did really bad acting job. It just did not feel right. Yes, we got couple of laughs, but that is about it.

We went to Michaels today and bought some inexpensive woodens shapes. Regina did all the coloring and styling :)

R E M I N D E R

Hey you all :) Don't foget to help Gabriel and I to raise some money for St Jude. :) . YOur generous donations are very much needed, to save lives Like Reginas.

We have 4 more days before we have to turn in the checks . On friday big Trike a thon will be held on Tutor Times playground, where one of the trikers will be Gabriel.

Make checks payable to St Jude Childrens Research Hospital
Memo line- Regina and Gabriel Tan

Please bring, or send Checks to following address:
Diana Tan
27715 Manor Hill rd
Laguna Niguel 92677, CA
(949) 290 6958

• . Remember, Cancer is the leading disease killer of American Children, and St Jude Childrens's Research Hospital is the leading Center for the Study of these diseases.( quote from St Jude Trike A Thon paper).

• St Jude is supported Primaly by public contributors

• St Jude researchers and Doctors are treating children with genetic immune defects and pediatric AIDS, as well as using new drungs and therapies to fight infection.

• St Jude is the world's largest pediatric cancer research center in terms of the number of patients enrolled and successfully treated. Since St. Jude opened in 1962 , it has treated about 20 000 patients from all 50 states and more than 60 foreign countries

Do I have to say more? I guess not. Your money will help save lives, and find cure. Please help :)

How cool :)

Check out what St kids are dreaming about. And if You read carefully you will find out what Regina loves and dreams about :) Anyway, I allready forgot about it. While ago, during Reginas treatment last year, there was box in B clinic waiting area , where kids insert their dreams , written on paper> I asked from Regina what she dreams, and she told me that She loves Rainbows, sunshine and butterflies. And now, I enter st Jude site and find her exact words published. How cool is that ???

http://www.stjude.org/quiltofdreams/0,6590,859_5137,00.html

Is tooo ,much wine good or bad??? Anyway, these are 13 bottles of wine we had to taste last Night. lol Not in particular order. Since I was unable to drive home last nigh( you would have never guessed), I spent a night in my friends house, and about 6 am I started driving home fro LA. It was one fast 45 minute trip. No traffic, but I still had headace and prior to that I only got about 3 hours of sleep.

Last Night I had a chance to leave my house and to do some things grown ups do sometimes. ;) About 12 Estonian chicks met up in Hollywood and did some wine tasting. It was something else...... lot of fun. These 3 girls are top 3 winners( top 3 best wines out of 14)- Meridian, turning Leaf, and Woodbridge