Monday, December 31
One of our Fave Child life workers and Regina.
Thank Kathy for Great New year wishes. BTW. Reginas ANC decided to finally show up. it is 560 now. She had 2 sets of labs drawn today. She is off fluids. BUT now she has another issue. More diarrhea... Nick is in hospital with him, because I was just way to tired to function in hospital environment. MOST of 4th floor rooms are empty. they just sent whole bunch of people home today. Regina has to stay for at least 3 more days- Antibiotics...
Now , that this year is almost over- in 4 hours. I would have NEVER ever imagined that we will be doing what we are doing right now. Regina was talking all year long going to Big Bear to do more snowboarding. Then she wanted to go to Estonia... Then she wanted more sleepovers with her friends.... I am sure relapse was not one of her plans, but hey, if life gives you lemons , you just have to make some sweeeet lemonade... And I am sure we have made plenty of lemonade to last a lifetime.
We are so lucky and happy to have Regina with us . Not in Million years we would have thought that chemo works so well and REgina is pretty much cancer free. Not in million years would I have thought that I would have so much patience and energy to deal with situation the way I am dealing . Not in million years would I have thought that I would ever Love CHLA and Dr Dhall... But we do. We all do. We love our 4th floor nurses , we love Dr Dhall and Finlay and other doctors who have very funky names ;), we love our childlife girls , who always find a moment to fill Reginas wishes for that thay...
We are so grateful for Laguna Niguel Elementary school and it's staff. They have been so understanding and helpful and I am just amazed the support I have been getting from them.
AND most of all, I would have never ever thought that we are surrounded with such great people all around the world. We are humbled by every card, letter, phone call, package, advice, help... etc. We are so blessed to have you all in our life... I just hope that you understand that we do care and appreciate your support. I am sorry for not sending out thank you cards for all of you. I just hope that you all will be there whenever we will need you( most of the time my Needs list consists of one thing- TAKE good care of my boy Gabriel ;) ) ...
Anyway, this past months have been very exhausting months, But outcome speaks to itself. We had HOPE, and We have Regina. Never stop hoping for a Miracle. Never:)
Happy Ney Year
THANKS GOD!!! I have not slept for 3 nights. Since PiCU does not have beds next to patient bed, Then I had to sleep in same bed with Regina, BUT those beds are way to small, and Instead of sleeping I spent all my nights watching some stupid infomercials...
Anyway, just hanging in there. But It has been 1o days and i had enough.
Happy New Year to you guys :)
Saturday, December 29
Regina needs platelets and hospital only has one bag of platelets. PLEASE GO DONATE PLATELETS. Regina needs then now more than ever. IF she does not get platelets, it may really happen that her brain starts bleeding... We can't let her platelet count drop to low
Nick is trying to donate today, we'll see how it goes.
Please send those GO AWAY HEADACHE kind of thought to Reginas way. She had headache last night and was unable to sleep because of that.
I am home with Gabriel. I MISSED MY HOME. I MISSED CLEANING IT. I missed smell of it, I missed my bed, my things, my shower, my closet. EVerYTHiNG... And most of all--I missed my wine and cheese... Oh the power of simple things.:)
PLEASE GO And DONATE PLATELETS. SHE NEEDS THEM!!!!!!
Friday, December 28
We had lots of drama here In CHLA. It all started day after Christmas. Regina woke up super pale and was throwing up - A LOT!! Then she started complaining headaches. She had all th signs that something wrong in her brain was going on. So doctors ordered her CT scan. She was send downstairs to do CT scan. When we got back to our room, there were few people waiting for us.
We were told- CT scan picked up something that appears to be bleeding . I started panicking. We saw few doctors. Within that 30 minute frame and all of us told us that not to worry, since we got it so early, Regina is safe. BUT to be even on a safer side we will move you to Pediatric intensive care unit. I was panicking even more.
Reginas platelet count was 34 000 and usually bleeding in brain happens when Platelet count is low. So Regina was given 2 bags of platelets and her platelet count was pumped up to 131 000.
Brain MRI was ordered to figure out how bad that bleeding is. I was patiently waiting. 40 minutes seemed like few hours. After it was done we went back to our PICU room H, and waited.
Doctor came in. I was fearing for the worst - BUT WE WERE TOLD THAT MRI PICKED UP NO BLEEDING!!!! WOHOOOOOOOHOOOOHOOO!!!! What looked like drops of blood on CT scan , was just calcification ( calcium deposits). SInce CT scan is ony black and white, it looked like blood BUT IT WAS NOT!!!!!!
OMG. What a relief. Now, what caused Regina to throw up and have headaches was most likely some yucky virus , not eating for few days, just being stuck in same room for 7 days... etc. Reasons are few.... BUT bleeding in her brain, new brain tumors IS NOT THE CASE. Reginas brain is still stable and hopefully it remains stable for many years to come :):):)
Now- Happy Anniversary to us.... My dh left me a great gift to RMDH - Wireless G plus MIMO usb Network adapter. Hopefully this will help me contact to wireless EVERYWHERE>.... ;)
Tuesday, December 25
Reginas ANC is 0. White count down.... She already received blood and platelet transfusions. She is eating again.
She still got runny nose and cough, but her chest sounds fine. doctors think it is just head cold, and will run it's course. But since her and is down, we are on a look out for fevers. IF fevers do not show up , then we will get out in 5 day. If she gets fever, that will guarantee our New Years eve in CHLA.
Thank you for checking in on us.
Christmas in CHLA was not that bad. We saw few santas, Regina got about 14 barbies, Bratz, my scenes.. ( SHE THANKS HER ANGEL JUDY, FOR SENDING HER HANNAH MONTANA DOLL and clothes). And Angel ANGIE FOR COOL stuff ( that's what she said, when I asked how she likes her things- COOL STUFF). lol
My husband and I are celebrating our 9th wedding anniversary on December 28th. Most likely we will be eating Hospital food and drinking lots of water..lol...
Have a safe holiday season,and do not over shop with those after holiday sales...
Regina send you all huge Xmas hug :)
Monday, December 24
Regina wishes all of you Merry Christmas and Happy holidays:) She is doing great now. Her appetite is slowly returning and she has been playing with Gabriel. Her mouth herpes is healed.
But Reginas ANC went finally big fat zero, so we still have to be inpatients until her ANC is back to 500 ( at least).
Christmas in CHLA is not that boring. Santa jumps in once in a while, organizations and individuals bring children gifts ( toys of course), everybody is happy and merry. We are to. :) Gabriel is little bored here with us, since Mommy Diana lost DS charger ,, Hm, I have no idea where I left it,but gabriel has been begging santa every night, so santa could bring him new DS charger...lol He was even willing to carry my bag , so santa could see he is on the Nice List....;)
I hope you all are having wonderful Christmas. And stay on the Nice list :)
Friday, December 21
OK, about reginas counts. I found out today that Reginas counts this morning were 3200 ( anc,) ALL her labs went up, instead of down. Dr Dhall told me that he has no idea why. SO , regina still has some immune system to fight off whatever bugs her.
About transplant- IT was very different from St Jude transplant. Regina got her benadryl, adavan, tylenol.. ANd then 4 bags of stem cells ( IV). In St Jude it was done by DOCTOR, and it was injected directly to REginas line. THis time it was done by nurses and doctor was next to them just writing down all Reginas vital signs. Couple of times she got really shaky, and I got really worried, but after few minutes shaking stopped. Most likely it was due to cold stem cells. :) ANyway, just hope that those cells engage fast and start building stronger immune system for my Miracle:)
Merry Christmas to you all :) thank you for all the well wishes, cards, candy, cakes, wine, toys for kids, glogg, cookies, more cakes and cookies, more candy, and hugs.:) I just hope that next thing you all get me is one good bike so I can bike these extra holiday lbs off. :)lol.
Please send those good appetite vibes to Reginas way. Today she only had one chicken nugget and 6 french fries. She wants to have Ikea meatballs with gravy instead... grrrrr. I wish hospital had IKEA restaurant here instead of McDonalds.
Thursday, December 20
Regina is in CHLA now. She was addmitted short while ago. I am not sure for how long she will be in there, but most likely for a while. We will be celebrating our HO, HO, HO time in inpatient, 4th floor, most likely in isolation. I am still at home, since my car has been serviced in MB, laguna niguel.. And they have been ignoring my phonecalls.
Christmas 2005 in Estonia
Wednesday, December 19
Please check out their Caringbridge website.
Tuesday, December 18
One of our special friend Melissa is needing your prayers. Melissa was one of our first roommates in CHLA. She has medulloblastoma ( similar tumor to Regina).
Melissa is not doing very well right now. She found out few weeks ago that WHILE she was on chemo, new tumors started growing in her spine. doctors are running out of options what to do. They want to harvest her stem cells , but since spinal fluids show some cancer cells , they are not sure how successful this harvest will be.
Then one more of our CHLA friend, Grayson - ATRT ( one very agrssive brain tumor) has been fighting hard. Hes counts have been down for 32 days now, and mom and dad are getting very worried about cancer spreading its cells all over his brain. ATRT is very fast growing cancer, and they have every right to be worried sick. I just hope that Graysons counts get back to normal soon, they can have surgery to remove more tumor, send tumor to Belgium, and they can make cancer vaccine to Grayson. :) They have been in CHLA since june also.
Then one more our friend Dylan just took his first steps after recovering from stroke. ( I think he was diagnosed in june also). WOHOO!! He is taking baby steps, but he is back world!!!!
We have not heard from our very special friend Luciana for a long time. I emailed her foster mom while ago, but I have not heard from them. i hope no news are good news.
Please keep your fingers crossed for successful Stem cell transplant. i am already stressed about it. And it shows .. my pants wont button.... and my friends just keep showing up with food...
Regina wishes you HAPPY HOLIDAYS and says thank you for cool cards that you all have been sending us. :)
Monday, December 17
Tomorrow will be another 10 hour day.
I do not get it. I do not get those moms who physically abuse their kids. And physical abuse is followed by verbal very disturbing abuse.
This family stays to Ronald McDonald house. I am not sure what kind of illness their kid has, but I know they come to neuro/oncology clinic. anyway, their little son was sitting on stroller. Mom started pushing stroller. Boys foot got caught in the middle of the doubble wheels, and boy was screaming. MOM pulled his feet out, SLAPPED across his face with her hand and yelled at him.. I WISH YOU WERE DEAD, why can't this damn cancer kill you sooner... She was angry mexican. Very large mexican with very large family following her everywhere..
Social worker was called and I had to leave after that because Reginas chemo just arrived and we had to start hydration. I just hope that something horrible happens to her and somebody slaps her across her face , when she is helplessly screaming, chained to her wheelchair ( she is to big for stroller). I just hope that I never ever have to see something like that again. It was very very disturbing sight to see, and I was not only one to witness it.
Sunday, December 16
Reginas counts are down. She looks and acts more tired and her sense of smell and taste is stronger than ever. Everything makes her nauseous. Bad Chemo, no candy for you!!!!!!
We had to cancel our plans for today. We had plans to go to Los Angeles Estonian house for a Christmas party. This is second year in row we were not able to go. Last year we had to go to St Jude for scans. This year, due to low counts. Children's christmas party in Estonia house is alway fun. Snacks, kids performing songs and dances, Santa comes and hands out gift for kids... And catching up with old good friends...
BUT our Sunday was not completely wasted. Dancing squirrel Productions came to Ronald Mcdonald house and performed one very fun and entertaining play called Holly and Snowflake adventures. It was amazing. Costumes, acting, stage that they brought with them... FUN!!!!!
If you go to my http://www.caliwitch.smugmug.com album , you can find some pics from that play.
Anyway, please keep your fingers crossed for tomorrow. Tomorrow and tuesday will be tough days. Regina will receive IV chemo, that can do damage to her skin. We also have to remove her IV dressing for few days, because if we do not , Reginas skin could just peel off
Saturday, December 15
Regina has 2 more days left to take oral chemo.. Monday, tuesday IV chemo. Wednesday, thursday - rest days--- and Friday stem cell infusion day.
But we had fun saturday. While ago we received party invitation from Dr Loudon and Dr Muhonen to their annual Children's Hospital of Orange county Neurosurgery Patient holiday party. So , around 10,30 we drove from los angeles to Orange county. It was such a fun party. Santa and elves ( dr Loudon was one TALL elf), and food and drinks , and presents and crafts. I LOVED the friendly feeling on that party. It was nice seeing some of the nurses who took care of Regina , and volunteers. I do not know why it is but Orange county volunteers and child life people are so much nicer than CHLA ones, we have couple of CHLA favorites, but nothing compares to CHOC. Dr Loudon and Muhonen were glad to see Regina and were happy that she is doing so great :)
Regina chose for her gift Moonsand, and Gabriel chose Cars Lego set. For me, I got bag full of lotions , soaps and sanitizers:)
We also had a nice surprise waiting for us there. If you remember, while ago, after Regina was diagnosed, we had a fun Princess Tee Party for her. It was perfect party. With all the glamour. We found our very favorite Tee party planner Risa doing Face paintings for CHOC kids. She is amazing with whatever she does. Seriously. She is very talented girl. Regina wanted to have snowflakes across her forehead and she got them :)
I also forgot to mention that LA Ronald McDonald house looks amazing during this time of year. HUGE christmas tree , decorations everywhere, chirstmas music, volunteers and groups coming in to do some arts and crafts... Fun:) Everybody is just so happy and merry.. WHy can't people be like this all year along.
( PS.. I can not add any photos.. wireless here in RMDH is slow and because of that it takes forever to upload pics)
Friday, December 14
I want to thank you all for your continuous support. Last night I had a nice surprise. We came home for a night , and about 20 minutes later doorbell ringed. One of our good friends stepped by to wish us merry Christmas and they brought us great homemade gifts ( glogg, saffron pastry, and very tasty cake) . That was JUST what I needed.
I also want to thank you all for Christmas cards. I am sorry If I forgot to mail you one, but know, that we are thinking about you all, J
NICK is coming home on Sunday JJJJ He was away for a week and oh boy… I need him home . It is way to hard to juggle between hospital and school. Gabriel had to miss Thursday in school because we had to drive to LA. And then on Thursday night we came home because he has to be is school and then we are driving back to CHLA tonight and stay for a while. Anyway,,, gas cards are appreciated…lol And because all of this driving , my back is not what it used to be. Even though I have great chiropractor, my back is not fully responding to his adjustments. I feel great for 3 days and then suddenly I get huge amount of pressure in my neck/head and lower back. Very weird kind of pressure. I never had this before. I always had back issues, but this time around it is worse than ever. I think I need deep tissue massage…
I hope you guys are having great holiday season.
Tuesday, December 11
Monday, December 10
Regina is doing awesome :) She is so awesome. She has been on oral etoposide ( chemo) .. horrible tasting liquid chemo drug since friday. She is doing really well. She has not vomited once. Today, while I was listening Cascada ( euro dance ), she was giving us dance show for about 20 minutes. She was sweating after her dance session. lol. All gabriel was doing,was running around in his underwear and shaking his cutie booty.... lol He is funny.. He still thinks that he is going to merry me... lol..
Anyway, on wednesday we have to add Temador.( more oral chemo) , this time she has to take 4 pills, instead of 2. I see little problem here. She can handle couple of chemo pills, but 4 is way to much. But we'll see. She always surprises me with her strength and determination.:)
Today we had to go to chla for hearing testing. NO surprises there. She has high frequency hearing loss. ( severe, that is what I was told, BUT, it is not severe enough to get her hearing aids. it is BORDERLINE... Anyway we just hope that it stays this way and does not get worse.
Regina will go to school tomorrow ( tuesday) and day after that. And then we have to check into RMDH in LA. So if you are i LA area and you are healthy, step by. We are most likely bored out of our minds.... This time we got request sent in for 6 weeks, but we'll see. The moment he counts come back out , we are out of there. ...
Now, You know. I was really worried about Regina missing school a lot. I was really good teachin her at home... I still make sure she reads at least 30 minutes per day... BUT, since I spend so much time in LA area, I really think that Regina will do JUST fine , IF she does not go to school rest of her life.....lol
OK. I have really fun story for you all. The other day someone asked me- WHERE ARE YOU FROM??? I told them I am from Estonia ( I do not like playing guessing games,,,, I just tell them right away, I think guessing games are stupid). Anyway.. Guess what HIS next question was???? Anyone?????? Oh you people... GUESS already!!!
OK. His question was... WHICH STATE IS THAT? My answer was--- It is nice state next to Finland.... lol ( which is true), but I am sure this is not the answer he wanted to hear...
One of my friends told me... How do I get myself into this kind of situations, and meet people like THAT// Honestly? I do not know. it just happens to me. And I kind of like it.;)
AND LAST, But NOT LEAST-- WE GOT PERFECT CHRISTMAS TREE!!! It is beautiful and expensive and it smells wonderful in our house :)
Friday, December 7
REgina scared me a little today. While we were eating lunch in CHLA , she told me her head is shaky again( thats how she felt before she relapsed). But I think this shaky head was due to spinal tap she had yesterday... She is fine now.
We saw Reginad Dr today. And he is not wasting any time. lol
Regina started her chemo today. she is on Oral etoposide for 10 days ( 40mg day). THis time it is liquid form and it tastes discusting . NO I did not taste it, I was told it tastes discusting).
10 days oral etoposida.
on Day 6 we add Temodar. She has to take temodar for 5 days. . Then on 17th and 18th of december she has IV chemo Thiotepa. Thiotepa is really toxic. It is so toxic that Regina can not have ANY tape on her body. She has her central line dressed with tape. WHILE on thiotepa we have to remove ALL TAPE, bandages etc because if we dont, her skin will peel off... Then she has 2 days brake (19/20 dec). And on 21st she will get her first round of Stem cells back. Dear friends. That means. Reginas Immune system will be DOWN DOWN DOWN and most likely we have to stay Away from all of you...:( She will start Gcsf ( immune system booster on 22nd of december and we are hoping that her ANC will be back by 31st of december.. If not, we may end up spening our new years eve in CHLA.
It is all very very exhausting and time to time I walk around in a bubble, not noticing that someone is calling my name, or telling me something. Please forgive me.. I am just tired .
I am so glad that Gabriel is such a great easy going kid. It warms my heart when Mrs Miller says something good about him. I really do not spend lot of time with him, teaching him, takinkg care of him. He is doing everything by himself . He is such an amazing kid and always knows how to make us laugh with his silly and sick sense of humor.( kind of like mine). I hope he does not grow up to be serial killer ( srry, I heard that kids who have tough childhood, and boys who do not feel loved by mothers end up being psychos.... ) . lol...
Take care and have fun holiday season.
Thursday, December 6
Reginas case was approved..... We are starting chemo tomorrow. But we will be home until Wednesday. On Wednesday we will check into Ronald McDonald house and try to survive upcoming few weeks.:)
Wednesday, December 5
Believe me or not, but MRI scans DID NOT pick up any cancer cells. IT did pick up something, but it surely is not acting like PNET. Dr Dhall believes it could be from Radiation therapy ( there is also some changes in brain stem but those were present before). Dr Dhall told us not to be way to exited about it since IT is very hard to tell WHAT is surrounding that area . It could be cancerous, it could be completely benign. Without surgery it is impossible to tell. BUT Regina can not have surgery on that area since it is part of brain and cutting it would be not the best idea.
So now we have few things left to do. I asked Dr Dhall what would happen if we quit now. He told us ( and we believe him. He told us that long term survival would be out of question. To give REgina chance in life, WE HAVE TO have STEM cell transplant with pretty high dose of chemo ( temodor, etoposide and Thiotepa). This would most possibly kill rest of remaining "cancer" cells there are left ( hiding).
But now we have another huge issue. Our insurance company WILL not want to cover Reginas treatment because of BOARD of MEDICAL ADVISORS ARE MORONS!!!!! YES. This time I mean it. I am not jokingly telling it. They are fat ass morons.!!!
IT IS MEDICAL NECESSITY. There are few papers published about relapses and MUCH NEEDED STEM CELL TRANSPLANTS. Dr Dhall and Finlay are doing everything they can. And they told me what kind of trouble they have gone through to get Reginas treatment covered. But Board of Morons, who have NO IDEA and have no EXPERIENCE and who have NEVER done stem cell transplants are denying lifesaving procedure...
This is what they say....
OUR Peer Clinical Reviewer JOHN GOLDENRING , MD has determined: The request for tandem stem cell transplant to treat a Primitive Neuroectodermal tumor ( PNET cannot be authorized at this time because it is considered experimental. The blue cross of California medical Policy to High dose Chemotherapy with Hematopoietic Stem Cell Transplantation for pediatric Solid Tumors, which is based on published peer- reviewed evidence based medical literature, was utilized in making this determination. This case was sent for matched , independent specialty review by an expert who is not associated with blue cross of California, and that reviewer confirmed that this treatment is still investigational and should only be done in the setting of an appropriate clinical trial.....
OK. Now, I am going to email Dr dhall and ask if we could do this somewhere like IN ST JUDE ????
ANYWAY.. JUST HOPE THAT Things get worked out :)
Tuesday, December 4
Mom flipped out... She started yelling at me.. YOU are stupid, she has asthma, you people always assume, ask first , stupid people... ( meaning WHITE people). I tried to talk to her, but she did not even let me say a word. It continued until we got to hemo/onco floor ( very painful 5 minutes). She was walking and yabbing, and yelling and talking. I told her, I am sorry lady. I do not have time for questions when it comes to sick kids. Your daughter was caughing AND my first respond was to PROTECT my daughter from germs. Now that I know, I am sorry about what happened. ...
It did not stop there. She kept going on and on and on and on.... ... Finally we reached clinic. AS I was walking to get Regina she said out loud BITCH( and few other ones). I froze for a moment. Clinic was full of people and they all heard. I walked back to her and told her.. I AM sorry , but you do not need to call me names. She looked at me and told me... Where is your daughters mask... LOOK , SHE IS COUGHING. ( well, regina was feeling nauseous because of somebody was wearing really strong perfum, and she WAS NOT COUGHING). AND she kept insulting me again and again and again.. Luckily CHLA reception girls stepped in and took good care of me. They asked me to wait until air is clear and then let me and Regina to go to get her antibiotics. It was really frightening for me. I tried to stay calm, but I just had one of the worst panic attacks I have had in years.. I was crying so hard It was hard to breath. My nose and face was getting numb... But after few hugs and calming words from other CHLA moms I felt better again... But then Dr Dhall entered and asked what's wrong and I started crying again.... and told him what has happened...
IT is all way to much stress to deal with and I guess I just needed to let it out... BUT GOOD news about Reginas MRI but a smile to my face and it is still there :)
Monday, December 3
I left 9.30 this morning to drive to LA. I finally got home 11 PM. It was heck of a day. Well, it was heck of a night. 3 hours in MRI room. from 7 to 10. LOOONG 3 hours. MRI technician told me that she would love to tell me how Reginas MRI was, but sadly she does not want to scare me since, she does not have access to previous MRIs, and since there is something still present, ( tumor) she does not know if it has grown or shrank. Anyway, Dr Dhall told me that he will let me know tomorrow ( tuesday) what is going on.
I am so worried. I truly am. I can't handle bad news.. I can't handle good news eather... Because good news is sugarcoated bad news... if you know what I mean. It is 11.21 pm and I just opened bottle of wine
Sunday, December 2
YOU have no IDEA how good it feels to be home. Our Neighborhood looks beautiful. Lot of houses have christmas decorations up and it is nice and quiet here. :) I love being home. Regina was also exited to come home... ALTHOUGH... when Dr Finlay asked- REGINA are you ready to go home. OR if you want you can hang out here little longer..( he was joking of course).. GUESS what Regina told him-- I WANT TO STAY HERE and watch TV. lol She is funny.
We baked some cookies and brownies and we are going to take them to outpatient nurses tomorrow. We have to stay to LA for WHOLE DAY. REgina has IV antibiotics due 11am. THEN we have nothing to do until 4 PM. And 4.30 we have to be check in for MRI. This time it is LONG MRI. BRAIN -40 minutes and spine 40 minutes. So, They are going to sedate her a little because I do not think that she can stay still for such a long time.
Shivers, shivers, shivers... keep your fingers crossed for good results. DR Finlay thinks that Regina is doing awesome. He is not sure what to call Reginas condidion- Miracle or something else, but he is impressed. Lets just hope that miracle continues to happen .... :)
Saturday, December 1
Regina is full of energy, and we are stuck here in CHLA. Mommy Diana has one of the worst headaches I have had for a while. vuih....
We saw dr Finlay today. All of us are waiting Reginas Monday night MRI. All I want is cleaner clearer brain..
Dr Finlay also told us that Insurance company still does not want to approve Reginas upcoming procedures ( stem cell transplant IN CASE SHE needs it). He told me that within past 10 years NO insurance company has EVER denied anything he has asked for and he is hopeful that with MEDIA help ( lol,, insurance companies hate those things ) we will get some things moving....
Our Roommate Luciana is out. last night one person from Agency came over and took her home. We fell in love with her. She was such a great kid. BEfore she left i gave her little gift. Just some clothes and Bratz pajamas,( she loves bratz). You should have seen expression on her face... THIS IS FOR ME, YOU DID IT FOR ME. She was dancing around and proudly showing her new clothes to everybody. When nurses told her that she can come home today. She came to me and asked if she can go home with me. I told her that her " mom " will be very sad if something like that happened. Luci told me- NO, my " mom" would be like- PLEASE take Luci with you. PLEASE!!!
Oh, that just broke my heart. .. Get well luci, and I hope you never have to come back to CHLA again .
Now, we get out tomorrow. ( sunday). We will go and BUY biggest christmas tree we can afford . lol And then decorate it and then clean our house and just hang out.
I hope you guys are having great time shopping for christmas, Drinking gingerbread lattes, and gossiping what, who and where.....
All I really want for christmas is more good news, Hope for year 2008, sour kraut, black pudding and lots and lots of Glogg..
What's on your Christmas list ???
I hope her foster family takes good care of her. They seem very nice people :)
Friday, November 30
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 :)
Thursday, November 29
Wednesday, November 28
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.
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. :)
Tuesday, November 27
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 :)
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.
REginas ChemoAngels --- THANK YOU!!!
Monday, November 26
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 :)
Sunday, November 25
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...
Saturday, November 24
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.
Friday, November 23
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, November 20
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.
Monday, November 19
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.
Sunday, November 18
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
Saturday, November 17
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.
Wednesday, November 14
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 :)
Monday, November 12
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...
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 :)
Thursday, November 8
Honestly, it was really good movie. And I am really glad that Gabriel loved it.:)
Wednesday, November 7
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.
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..
Monday, November 5
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...
Saturday, November 3
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....
Friday, November 2
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 firstname.lastname@example.org 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.:)