Hmh...

Something has happened to my "roommate post" Oh well....

Anyway, we got some news today. Day 5 and cultures are STILL NEGATIVE!!! WOHOOO. Alcohol lock and cefapine ( sp?) antibiotic seem to be working. Only bad thing is that every night when they alcohol lock her line, Regina smells like she just gobbled down few bottles of hard liquor.. I should smell like that instead...... Last night I tried to score some Vicodin while they were offering to it to our roommate, but I did not fit the requirement...lol

Now, around 6 am doctor came in and told us ---- 5 more day... Then he came back 9 am and told us- I have some good news for you. We try to get you out of here on Sunday. But we have to set up home health care nurse to come to your house and do all procedures needed to do.

So we get out on sunday, come back to CHLA on Monday ( MRI) and then on wednesday we see dr Dhall... Yesterday I had really emotional day. I am getting this pre MRI syndrome again. Somebody was asking how Regina is doing ( well, CHLA psychologist),, and i started crying- I DON"T KNOW HOW SHE IS DOING. I don't know. I want to know but I dont know. I also told him. Physical appearance does not matter to me right now. Yes, she looks good, but what if tumor is stable instead of shrinking and we are almost done with treatments, and what if we stop treatments and tumor starts growing. BAAAAAAA BAAAAA BAAAAA... he did gave me some good information, But I can't discuss it here.

So our prayer "bears" send extra shrinking thought to our way.. We need them more than ever :)

Bummer...

Line culture is still negative, but REgina is running low on platelets.

They want to keep Regina in for couple of more days for monitoring, and to make sure infection from her line did not more into her body... Just to be on a safer side.:)

Chemo Angels.

In Chase Playroom ( 4 west)..

PS>>>>>>> Our Friend Dylan is in hospital with nasty bug C-diff. His ANC is also 0.. and C-diff is not fun....
More info here... http://en.wikipedia.org/wiki/Clostridium_difficile
I want to thank Reginas Chemo angels from Bottom of my heart. When Regina was diagnosed first time Her chemo Angel was Carol. Regina still talks about her. In REginas vision Chemo Angel is someone who wears a white dress, has long white hair and has huuuuge wings.:) I like her vision. In real life Chemo Angels are group of amazing volunteers who volunteer their time and energy to make special kids who have cancer feel good, by sending them mail, ( letters, cards, packages, etc). This year Regina has 2 Angels. Again, Amazing angels. They seem to know what Regina likes and every letter, card, package Is About what Regina likes :) THANK YOU AGAIn.
If you would like to be Chemo Angel, please check out their website.
http://www.chemoangels.net/

One of reginas Angels sent her CUTEST gift today...
All of you know my relationship with "soft" toys. I am done. NO MORE... BUT today Regina and Gabriel received 2 CUTEST mouses . They look like they have escaped from Jail...lol So since they are so cute and perfect, I decided they are going to be Reginas Pink Christmas Tree toppers :) Very Cute :)
BTW, If you would like to send Regina something, but have no idea what she likes then perfect gift for her is Angel and St Jude ornaments:) St Jude still has very special place in my heart and I feel extremely sad that we are not able to be there .. but we still support St Jude and donate money to them. Also, this year, do not forget to support Children's Hospital of LA. I know I know, I told you some horror stories,,, But trust me, things are getting so much better in there. I have not SEEN huge masses of people on 4 west. Also, they do not allow therapy pets there anymore. I think that is smart :)


And, Regina is still in Hospital today. My dh is there with her tonight. I just wanted to come home after 2 days of babysitting. Our roommate Luci... wanted to eat chips all day long... I told her during lunch time- I take your chips away if you do not eat your chicken... I never seen anyody starting to eat chicken so fast...lol.. I also asked her to start eating her veggies,,, she told me.. Her mom told her that veggies are yuck... and if she does not like, she does not have to eat veggies. OK. :)

Oligella urealytica

Infectious disease dudes were here again and they told me that there are only 2 published papers and cases they could find in their database ( it does not mean that those are only cases, rest of the cases were just not published). So yeah, we are still treating her line, we still do not know HOW she got it, OR why that bug chose her,. AND we do know that you can get REALLY sick from it if left untreated. :) There ya go. Regina gets more special with each passing day.. Lol.. And seems like she is well known around here...;) Every time somebody comes to see her ( doctors etc). they tell her, We heard good things about you ;))))

My little miss Unique :)

Nojah...

Today in hospital. BOOORRRIINNNGGGG . BOOOOOO Backyardigans and regina refusing to do her "homework".
We are sharing a room with 8 year old girl. Her mom is not here with her. Her mom came once last night for 30 minutes and left. Today her mom came for 5 minutes and left. She cried both times after her mom left. :(

Anyway, infectious disease person came in here and told me he has no idea how she( regina) got it. It is sooo rare that they do not have much information about it. And then he was asking whole bunch of questions about Reginas past... And then he left. I asked it's name, but I forgot . It sounded like something I would name my next daughter with..... hahah

Anyway, we are still inpatients- till end of this week. YAWWWNN. If you have nothing to do come over and entertain REgina...

Oh BTW... Remember, Reginas fund is still up and running.:)

BTW. If you would like to receive Christmas card from Regina, please email us your home of office address.

dianatan78@gmail.com

REginas ChemoAngels --- THANK YOU!!!

Monday update.-and update-update...

ok. it is almost 6pm. now we at least know what kind of gram negative infection it is. i was told that it is very rear infection and only handful of kids had it. i forgot it's name since it was extra long and i fell asleep before doctor pronounced it out.. good thing about it is , that it is slow growing and luckily it has not gotten into her body. it just sits in her line and grows and grows, and grows, until growth is stopped with antibiotics.
doctors also contacted infectious disease to ask more information about this kind of infection. If bacteria created slimy layer inside her line, then it has to be pulled out fast...
but we have to stay here for at least 4 days before we have more answeres.;0)


Culture from Reginas line they took late last night came out negative ( Good news :) ) But I am little suspicious , since First 2 times they took cultures from line, it was also negative ( first 3 days) and on 4th day it started growing.... Hoping that antibiotics Cocktail regina is on right now, takes care of her infections :)

Line infection update. and update no2.

WE HAVE ANC------ 650!!! WOHOOOOHOOHOOOoo but her white blood count remains extremely low... I just got email from DH Dhall.( reginas onco.) First, they are trying to treat Reginas Central line with antibiotics, and if after treatment, bacteria still grows, then they will pull her line...
ANd after little wait, line has to be put back in ( upcoming Stem cell transplant).


UPDATE: Regina is inpatient now in CHLA. Room 429 A. She is doing great :)



Infection is called Gram Negative Rod . It does not sound harmful, but it can kill. WE are extremely lucky that Regina has not shown any infection signs like fever or chills. Most likely doctors in CHLA have to pull REginas line out because if we leave it in and her ANC remains 0, most likely infection will take over her body and we could loose her.

PLEASE- get well thoughts, prayers, meditation etc... needed...

nMortality rate of gram negative rod bacteremia is
12-38%

nFactors associated with higher death rate include… ARDS, septic shock, DIC, anuria, presence of a central venous catheter, unknown origin of infection, inappropriate antibiotic treatment

nMortality rate of gram negative rod sepsis with shock is 30-50%

nMost important intervention is early initiation of appropriate antibiotic therapy

Most common gram negative species

nEnterobacter – 18.5%

nKlebsiella – 17.8%

nPseudomonas – 14.4%

nE. Coli – 13.6%

nAcinetobacter – 10.1%

nSerratia marcescens – 9.7%

Phonecall from CHLA...

It is saturday afternoon. We just got a call from CHLA. Reginas second culture ( the one they took in Mission hospital).. started growing bacteria inside. WE have to go to CHLA . We were told to come in right away and start vancomycin , but I told them, SHE has had this line infection for over 2 weeks. She had blood taken from her line, she had platelets put in, she had blood transfusion and NOTHING has made her line infection worse. AND again, bacteria started growing AFTER 4th day, and they do not know ( again) what kind of bacteria it is.
SO instead going to CHLA today , we have to go tomorrow.
My husband is going to take REgina there tomorrow. Most likely she has to stay there for 2 nights. Also, this time around they have to discuss if line has to be pulled because she can not have stem cell transplant when there isbacterial infection in her double lumen..

I just hate drama. I HOPE antibitoitcs will kill whatever is going on in her line and we do not have to pull it.

CHLA

We spent our whole friday in CHLA. REgina needed platelets and blood. her ANC is still not there. We hope that it shows up soon because Regina NEEDS to go back to school. And I want her to start feeling better. She is getting tired of all what is going on.

Tuesday...

Yeah, we went to CHLA today. Regina needed platelets. Her count was only 24 000. i do not understand her. She is not bruising, bleeding,- there were no signs that her counts were that low.
Her hemoglobin was only 8.8 ( I was hoping higher number since she just got blood transfusion yesterday,, but oh well, chemo side effects are unpredictable..

Now we have to go back on friday- labs...

All of you- I am thankful that you are here for us :) Thank you for your support and help with Gabriel. THANK YOU for all the hugs and well wishes.. Thank you for everything:)

Have a great thanksgiving.

Reginas body is getting tired...

For our and Dr Dhalls surprise , REginas counts were horrible today. So horrible, she did not qualify to receive Irinotecan today. :( Instead, we spent 3 hours waiting for blood ( hemoglobin was 7,7) and then another 3 hours receiving blood... and it is 8 PM and we are finally home.. It was 12 hours day... Very tiring .

Dr Dhall also told us that our insurance does not want to cover Reginas stem cell stransplant. Their excuse is, Regina already had one 4 mini transplants in ST Jude, she does not need anymore... :( ( She does). So dr Dhall and CO.. Are still doing some talking to make blue cross to cover her transplant...

So, guys, since reginas counts dropped way to fast, PLEASE hope that they RECOVER AS FAST AS POSSIBLE. NO FEVERS, NO INFECTIONS... oh..

We have to go back to CHLA tomorrow for Platelet transfusion... She needs one before thanksgiving.

Update...

2003

Luckily we did not have to drive to La. We went to our local ER. We did have to spend there whole lot of time. We went there 8 AM and got back 2.30. They took cultures from Reginas line and now we have to wait and see if something starts to grow in those test tubes.:)

Reginas counts were pretty good. Her platelet count was 75 000 which is excellent. Her hemoglobin was tiny bit low 7,8.. but CHLA Oncologist on call thought that we can wait until monday ( because we go to CHLA tomorrow).

NOW, it was so weird being back in Mission ER. I was sitting there and started to cry, because all those June 21st 2007 memories cam back to me like it was just yesterday. To make things worse, doctor on call there was SAME doctor who had to give us BAD news . He did Remember us and was glad to see that Regina is doing great.
For our surprise I saw somebody very dear to us. Dr Loudon. That was complete surprise. I was sitting in ER ( in private room with Regina), when I saw somebody walking by,, I would recognize that walk from anywhere...lol I am people watcher.. I ran out of room and yelled... DR LOUDON... hihihi lol Of course he was glad to see also that Regina is doing great ,.. and he really wants to see Reginas scans...

Anyway, after beth and Heather dropped us some lunch, we were discharged and left Mission Viejo ER...

Tomorrow will be another Outpatient Chemo day for Regina . Irinotecan and labs, and most likely she will get blood transfusion

Have a fun sunday

LOTS OF GOOD THOUGHTS NEEDED....

Winter 2005 In Estonia

I just received phonekall from CHLA (7.16 AM). If you remember I told you that there is possibility Reginas doubble line might have infection in. After 2 days it was negative, But bacteria started growing after 4th day, and now they think there is something going on in her line, and they want us to go back to CHLA today IF home healtcare nurse can not come to our house... Oh lalalal, I was not ready for this phone call this early. AND I was not ready to hear that something is growing in Reginas line. I have been taking Excellent care of her line, and it did hurt a little that something is in there. :(



So, now I am wating and waiting and waiting and I hope they work something out so we do not have to DRIVE to LA area today.

:)

Regina had a great Night:) She only vomited once and even did not wake me up when she wanted to go to Restroom.. She was so proud of that fact.lol Right now she has been playing with legos for 3 hours straight. She makes something but I am not sure what.. it looks like weird futuristic house with christmas trees in it. :)

We will get out around 4 Pm today.I am forcing Regina to drink because if she drinks enough, ONLY then we get out 4 pm. LUCKILY we do not have to come back to CHLA this week. Home healtcare nurse will come and draw labs on Friday.
On monday we come here for outpatient chemo.. and labs, and wednesday and friday nurse will come home again:)

See you around :)

ROUND 5

Monday----
We are in CHLA . Today is little complicated. When I started changing REginas line dressinb, I noticed that skin that surrounds her line is red a little swollen. Also she has 3 suiters (sp?) surrounding her line, that keep line in place, and those injection sites around suiters are red and oozing a little. So now Regina is on antibiotics ( vancomycin). This is only antibiotic she is allergic to, but luckily she got good premeds and so far no side effects. Lets just hope that she does not have serious line infection and we get out of here on wednesday.

Later today ( monday night) she will get her chemo.. I am guessing it will happen around 10 pmish...

Tuesday----
Regina had pretty good night. She vomited once over night .Right now she is eating her breakfast. She is pretty drugged up... Atavan, zofran, benadril, tylenol.... plus all chemo drugs.

We are in room 430 A.. Yes room for 3 families, but this time we got that bed in corner, so we have much more space around us :)

oh...

I forgot to mention. Couple of days ago I took kids to see Bee Movie... Again,,, Gabriel was against it , since he has some weird fear about movie theaters. But the moment movie started He was clued to it. I have never seen him laugh so hard at any movie... He was laughing at jokes I thought kids do not get it ( of course Regina did not get it) But he did... I guess he likes Jerry's kind of humor. So do I.
Honestly, it was really good movie. And I am really glad that Gabriel loved it.:)

Oh jah...

(This is why I say NO to toys..... if I get one more deddy bear or bunny, or frog, or cat, you get these for exchange... ;)
We saw our fave -Dr Dhall today.. Oh man.,, than doctor is one busy doctor. He was pretty much running from one room to another..lol he is funny..

OK. Heres the plan. CHEMO and lots of it.. our last round of this regular chemo starts on next monday.
MONDAY
TUEASDAY
WEDNESDAY in hospital.
wednesday, thursday, friday , saturday oral chemo before bedtime .. Of course her regular antibiotics......

Wednesday afternoon home.... then home health care nurse will come to our house to do Reginas labs.( on Friday)
Then on following monday IV chemo in CHLA... Then more labs labs, labs.. until she has recovers ... And then Stem cells transplants with chemo....


OK then... We will not be staying to RMDH . We will be home most of the time... But that does not mean that Regina will be going to school... No, no , no... She stays home with me and no fuss about it... sorry you all....
AND 4 more days before My sister arrives..

Nothing new....

it was ordinary day in Tans household. I took Regina to CHLA for labs. Her platelets doubled over the weekend- WOHOOO to that... Her hemoglobin dropped a little again, but it is still on safe. Her white blood count went up, which means most likely her ANC went up couple of points as well...WOhooo to that too.

NOW... we have to go back on wednesday to see Dr Dhall to discuss our further plans... If Dr Dhall thinks that Regina is OK to start chemo on thursday, then Thursday it is,, but if she needs more time , then I propose maybe after Thanksgiving.. BUT that means, that her counts will be really bad during christmas... .. oh, but I am not trying to think to much ahead....

Few days ago I went to Ikea and bought 15 yards of white fabric with black blobs on it... I just had a sillly moment... And while I had that silly moment , I undusted my sewing machine and sewed few curtains... Now my family room looks really silly, but I love it...lol I am sure , people who step into our family room will think in their heads- OMG this is ridiculous... Diana has no taste whatsowevereeeeeeeeeeeeever..... But Diana really does not care what people think ;) I listen what they have to say, but do I really have to do what they say??? No!! lol

AND last, but not least... few of you know that I love chiropractors and what they do. I had wonderful chyro.. Dr Ray Ganem.. Sadly, I do not have time to drive Irvine 3 times a week to get my back/neck adjusted.. and he was the best,,, seriously he was,..... because he relieved my pain and pressure with only 2 adjustments... I was his patient for 2 good years....... But all good relationships come to an end... and I needed chiro closer to home.... And I found one-m VERY CLOSE TO HOME...lol He is pretty much our next door neighbor.... so far I have seen him twice and my neck, upper back feels SO MUCH BETTER. His style is little different from Dr Ray but I am convinced that he can help me, and he can stop this " aging" process in my bones.;) Now, I just hope that my Insurance covers him, Or I am going to be $^&$^# mad at Blue Cross of CA, because how could ..they not cover good doctors and their services.....


But if any of you who live in OC area and are looking for a chiro... check out their website...

http://www.familyandsportschiropractic.com/

HANNAH MONTANA!!!

Hannah Montana concert was a blast. Regina loved Hannah Montana part. But when Hanna changed to Miley , Regina told me that she wants to go home. She thinks Miley is for older people like me...( WHAT???) Miley, or hannah, Hannah, or miley??/ But I do have to admit... Myself I prefer Miley ;)

ANyway.. Go check out our pics:) Liz and Kimberly... You have to fill us in, what happened in the end....

http://caliwitch.smugmug.com/

EXITING!!

First , I start with not so exiting news. We went to CHLA today and found out that Reginas counts have dropped. I am upset about it because her ANC dropped from 3400 to 1200 and that is not good. Also, her Hemoglobin dropped, but it is still on safe side. Her Platelet actually got better. They jumped from 34000 to 39 000, but Dr Dhall thinks that REgina can manage to survive this weekend without having any serious issues. Another bad news. Since Reginas counts are dropping, I have to go back to CHLA for more labs and I AM NOT LOOKING FORWARd to it. Usually buy now her counts should have been stable, but this time, they just kind of keep jumping up and down..



AND NOW VERY EXITING NEWS... I hope you guys do not mind mentioning your names, but if you do, email me at dianatan78@cox.net and I take your name off from here...
Liz, Lenka, Sylvia, Melissa, Betina, Candace, Becky and Terry- Thank you so much for your support. And thanks for Mileys world..... Most of all. thanks for Liz for getting Regina HANNAH MONTANA TICKETS. I am not sure who is more exited Regina or I. When I told Regina today that she can go to see Hannah Montana, she let out this weird scream ( I AM SO EXITED) with very low timber , she almost sounded like boy. Then she asked me to find Hannah montana DVD, so she can practice..... I do not get it,, Practice what..??/ MY CAR's CD player is filled with Hannah/ Miley stuff, and I have to Admit,, I love Miley songs. ;)

SO TOMORROW, we are going to see HANNAH MONTANA .


Now, there is something else I want to talk about. This is more serious issue for me and please , do not take it personally... but I have to ask you a favor...lol

I know most of you care about how Regina is doing and most of our conversations start- How Regina is Doing? Honestly, You do not have to ask me this question because you feel obligaided(spellig) to ask this... You do not have to .:) But If you want to , that's ok ;) You do not have to feel bad not asking me about how things are ..... If you know me,,, I make sure I LET you know how things are ;) lol

But I do want to thank you all for being here for us.. And I want to thank you Reginas Chemo Angel for Sending Regina the coolest crafts ever ) She loves them all.:)