UGH.. that is all I got to say.

You know that I always tell you how it is, and I never sugarcoat the truth. I wish I had some better news for you but I don't.

Anyway, sad truth is.. IF gamma knife radiation did not work- REgina has max about 10 days. Brain stem tumors are not FUN and EASY tumors to treat or cut. And they take you down FAST.

We went to CHLA today to consult Dr. Dhall. We have not many options.. JUSt some, to MAYBE keep regina here little longer. . There are 2 things to do now- NOTHING, or Hit her with pretty serious chemo. NOTHING IS STUPID. Sorry. I understand that life quality is important. But we just had surgery, and gamma and to do nothing is just S T U P I D.
Other way is... Cisplatin, vincristine and lomustine ( CCNU). side effect for this chemo is low blood counts and possible infections which means more hospital days... It took me while to convince my DH to go THIS way. He was against this chemo. Originally we were told to start different kind of chemo, but that chemo is WAY to soon after surgery. Maybe, if in 6 weeks Regina is still here, we can try that other chemo. Keep your fingeres crossed.

NOW. ON monday I am going to take Regina to CHildrens hospital of Los Angeles. We will be admitted maximus of 24 hours. After that we will go home, and visit CHLA occasionally for other chemo drugs. Home healtcare nurse will come to our house and draw Reginas labs. And if her labs drop, then we have to go to CHLA for some blood or platelets.

Right now there is no right way . I hope that things tak better turn soon....

THANK YOU FOR YOUR SUPPORT GUYS:) YOU MEAN A WORLD TO US :) Myself I am doing best I can. It's not easy but what else can I do ??? :)

Gamma knife

LETS JUST SAY, I AM HAPPY THAT ONE MORE THING IS DONE.
Today started 7 AM. I took Regina to Hoag( newport Beach), gamma knife center. Facility is new and has newest technology in. LOT OF WIRELESS equipment like heartrate monitors, and oxygen monitors etc. MRI is latest model. and so on.
Reginas day started out good. She was given mild sedation so that Dr. Loudon and crew could mount her light weight titanium head frame. After sedation 4 spots on her head were injected with extra sedative, to make sure it does not hurt when they mount headframe on her. IT is screwed ligtly to her scull, and headframe is needed FOR making sure , she stays completely still during GAMMA knife radiation. After that she was wheeled to MRI room, and after that straight to Gamma knife room. Gamma knife lasted for 1hour and 30 minutes since she had again "tiny Relapse" and more tumor had to be radiated. SHE stayed awake during gamma knife, and listened madonna music and after that Jewel. .
By tiny relapse I mean- One tumor, close to her brain stem has a mind of a monster, and decided to spread a little --- Like multiply 3 times... So because of this, dr Loudon had to spread radiation to those stupid baby tumors :(..

After gamma was done, I was told how amazed they are with regina. Such a trooper :)

AND NOW, THE MOST PAINFUL PART- removal of Gamma knife titanium frame.. Nurse had to drill out screws and that hurt.:( after removal of left frontal screw, regina started leaking fluids. AND after 10 minutes she was still leaking them out of her spot. So nurse applied pressure bandaid to her insision, and we drowe to Dr Loudons office in Santa Ana. He stiched that tiny hole together, and we were done.
Dr Loudon Spoiled Regina with some special gifts :) Regina got cupcake making set, and "toy" dough blender :)
Right now Regina is home, Eating her first meal of today, smiling, and is really exited that today is almost over :)

Dr. Loudon is one amazing man :) I can't believe that he did what he did and REgina is still here after such a major surgery. Dr Loudon told us that THIS IS MOST amazing thing he has done for a while. AND he should be very impressed with his own work :)

TOMORROW, Friday- We are going to CHLA to see Dr. Dhall because we HAVE TO start chemo RIGHT AWAY. those tumors have mind of their own.... and we have to stop them.

Hi from Regina :) Seems like her headaches are getting less intense. She is working hard finding her balance, since right side is weaker than left, and she has hard time understanding why.:(
Other than that pretty slow around here.:)

:D:D:D

We are home :) Regina is resting on sofa and watching tv :)

:D

Regina is doing great. :) Chest tube is out. Lung is functioning fine :) Tomorrow, most likely her EVD will come out - external shunt. By sunday we should be home .
GAMMA knife - on thursday and after that back to CHLA to try some chemo.

RECAP--
Brain surgery -2004
32 Radiation treatments in 2004
Stem cell rescue
4 months of high dose chemo with auto stem cell transplant ( 4)

Brain surgery june 2007
5 months of high dose chemo with stem cell transplant
9 months of oral chemo on 2008

Brain surgery on January 6th 2009
Brain surgery on January 13th 2009

one double hickman line
2 broviac line placement procedures.
Picc line procedure

Collapsed lung, chest tube inserted...
Gazillion pokes, numerous blood transfusion, platelet transfusions, infections , etc...

Upcoming Gamma knife
Upcoming experimental chemo...

... Not sure what else...I am sure there will be more upcoming procedures and surgeries and. meds...

.. why we are doing this... "no child should die in the dawn of life." Danny Thomas

Regina is doing good. Chest tube is turned on again, because she was leaking some air. Today’s x ray showed that lung had expanded again and is functioning fine. Tomorrow they will turn her chest tube OFF again, to see if her lung remains healthy and self fixed itself. IF not, then they have to take her tube out and put new one in… NOT FUN. PAINFUL.

Today was another milestone for Regina- After 14 days of laying down, she took few steps without any help. JJJJ SHE IS VERY WEAK and even 3 steps for her is challenge and exchausting thing to do J BUT she did it. SHE is getting better.
She also had finally some REAL FOOD--- ONE nice piece of chicken JJJ YUMMMO.
She got her last dose of steroids on Sunday night. NO more steroids. I hope her brain likes it this way. J

01/20-- REgina took LONG 15 minute slow walk in CHOC hallways:)

:D Doing good:)

Today has been day full of unpleasant surprises.
MRI was postponed due to lack of anesthesiologist. So now MRI is scheduled to be on January 15th, 12.15.
Then morning X ray revealed that Reginas lung collapsed. Chest tube was put in to drain excess air. Tube will be left in for few days. IF they still see air leaking tomorrow, then they will contact “lung Doctor” to see what is causing this. ALSO they think that reason why she I leaking air, is because of injury during broviac line placement surgery . IF something goes well, there are few things that always go wrong.

Regina herself is peacefully resting. She has her breathing tube in , Hooked up with numerous monitors. She got blood transfusion today because her hemoglobin was low ( 7,6) LOW. Tomorrow she will get NG tube in for nutritional purposes. She has not eaten for days, and I thought it is a great idea to give her some kind of nutrition. SHE needs food to recover.
I want to thank you all for continued support and get well thoughts.

Another touchy subject I want to talk about. I don’t pray. I have faith and I have hope, and I feel best way to cope with things is to believe in things that matter most- Love, friends, letting it out once in a while, sharing Reginas story with world, being happy and sad same time. I appreciate your “prayers”, but I do not turn to “god in Hope that he is our fix. I know for some of you I sound absurd, but hey… We all are different and have right to believe in what we want to believe in. And I don’t appreciate if somebody wants to change that about us, pushing their beliefs that GOD is only right way.

AND you know what--- If there was god… IT better hide, because I’d be really angry at IT.… Reason is well known for all of us.

Anyway. Lets just hope that Regina recovers fast. Lungs, brain, central line, strength…. LOT of things that need to be rebooted…..

Love
Di.

January 16th.

Regina woke up on Thursday around 3 PM. After she was weaned from paralytics. Scary feeling. You can feel things, but you can’t move. So nurses had to monitor her heart rate to see when she was waking, and any signs of pain. The moment they saw her heart rate and blood pressure rise, they gave her extra dose of painkillers.

Se woke up happy and ready to play  Her voice is still very quiet due to ventilator being in her throat for few days. But it will come back to her.

She does not complain that her head hurts as often as she did last time.:) She is not as moody as she was after last surgery. And she looks amazing
Last night she came up with some crazy story that here is ocean out there , behind her closed curtains, so I had to open her room curtains to show her that there is no ocean. She kept hearing “ocean “ sounds, but it was just her chest drain making those bubbling sounds . The meanest order she gave me on Thursday night – CLOSE MY CURTAINS, and then SLOWLY walk away… Please…..
It just made me laugh. Her personality is silly 

Now we just have to hang out here few days, till she gets back to normal, and regains some strength. She is still on feeding tube, but since she has not pooped for 8 days ( poor her), her food does not want to stay in her, and she vomits after each feeding session.
I’d vomit to if somebody gave me pediasure… YUCKKKKKKKK

IT is saturday today. Regina is doing much better:) They turned off her lung tube....:)

GOOD NEWS!!!

Dr Loudon performed Reginas 4th brainsurgery today!!!!! He managed to remove 97% of her tumor:):) WHICH IS AWESOME!!!! Now lets hope that gamma knife and some chemo will take care rest whats left :)

Dr Loudon removed 2x1 cm tumor. He told us that it was wrapped around 2 major blood vessels in her brain, but they got it safely out:) He also removed more close to ventricle area..

Regina did wake up for 10 min. today after surgery because her meds wore off. She recognized Nick she squeezed his hand:) right now she is intubated again and dr.s start waking her up after tomorrows MRI.
She also got double central line today,so NO MORE POKES!!!! WOHOOO!!!. You should see my girls hands. They are all blew because of pokes. Even her legs have blown veins in.

LET THE RECOVERY BEGIN>>>.

PS. If you guys have 5 million dollars hanging around give it to choc neurosurgery. IF they had MRI machine i OR, then They would have got Reginas tumors with first try.:)

Regina says thank you to all of her classmates who sent her awesome letters and cards. She also misses everybody and can't wait to be back In school:):)::):):)

Regina is scheduled to have surgery 10.30 am . Surgery is to remvove tumor that was left behind due to"technical difficulties.

Feel free to visit her anytime after Tuesday. She misses seeing her friends and is sad that she cant play with them now:(

She is still pretty weak and in pain but lot of her problems are due to her medications.Antiseizure meds steroids,painkillers-they all come with side effects and it is really hard to figure out what causes what.she sleeps most of days and nights because of her meds and is really weak because she has nor shown any real interest for food. Myself I am doing ok. It is tought To see my little girl like this, but she will be ok soon:)
Thank you for your continuing prayers and get well thoughts:)

Saturday

For Life As it is.

Regina had a tough day yesterday. Pain, allergic reactions to tape, not sure if pain was pain or itching. Headaches, vomiting. She did smile and watch tv and eat some food. But in general she acts little upset and is not sure what is going on with her. Her personality has changed a bit. She still has her sense of humor, but she has more anger in her now, and when she gets upset, it is almost impossible to calm her down. 
She is off all Iv meds and fluids. In that sense she is doing good.

And now worst stuff. Regina has one more REAL surgery coming up on Tuesday. Sadly her surgeons missed one big chunk of tumor that is in safe area, and they do not want to waste gamma knife radiation on that spot. Dr Loudon believes that best thing is to cut it out. Of course, risks like stroke and seizures and bleeding in brain are there, and who knows what else could go wrong. But I still feel like this is right way to go.

I know some of you are starting to doubt my sanity- why I am doing this. I am sure Nick thinks same thing, but sit and wait?? No. IF something goes wrong during surgery- we have great memories of Regina . but if things go as planned, we can spend more time with her and create even better memories. You know what,I actually enjoy this one on one time with her in Hospital. I feed her, I play with her, I change her diaper, I give her meds. Yes, I am lucky that I do not have to work.

Anyway, keep your get well thoughts coming. She needs them constantly 

(THURSDAY)

(Last night)....

:) Thursday afternoon.
Regina agreed to stay to CHOC with daddy, BUT only if I bring her cupcakes from Ralphs- because she likes their taste the best, pink frosted cookies and Mario Party DS game. YES, she is WAKING UP!!! She had pretty good day. She is weaned of from her meds ( well most of them). She still gets Morphine, anti seizure meds and steroids. Her fluid intake through IV was reduced, so soon she will be asking for more food.
Today she ate 2 Carls Junior Chicken starts and 2 lotte cookies( from Estonia). She is also drinking plenty of fluids and is starting to talk more:) Her sweet voice is coming back:D:D:D Her Right hand is stronger than this morning :)

OH, and her sense of HUMOR is back. I told her today to EAT EAT EAT, so we can go back home. She looked at me like I was grazy MOMMY, she told me- I LIKE IT HERE!!!! I WANT TO STAY AS LONG AS POSSIBLE!! So if you guys feel bad that she has to be in hospital, please dont. SHE enjoys one on one unconditional attention. :) ANd I totally understand her :)

Doing good

Regina is doing good. She is breathing on her own,she talks,wiggled her toes and already jokes around. She is not very strong right now,and gets easily frustrated if I don't understand her be aide her speech is still little blurred . Right now she is watching tv.

Surgery

Axiem Stereotactic Guided Craniotomy for tumor resection---

That's what Reginas surgery was called.
First, I would like to thank all of you for emailing, calling texting, leaving Facebook, myspace, ORkut notes. THANK YOU.

NOW about Reginas complicated surgery. Surgery went ok. Dr Loudon told us that LOT of tumor got removed. It was not an easy task, and he said that this Stereotactic method was rigth kind of surgery and was very helpful. THEY removed MOSt of it in ventricle, ( PArt of it is still there close to basal ganglia), then sucked out one more tumor. Bad news is there is one tumor that had doubbled in size over 2 week period. AND it has about 2-3 more weeks before it starts worring him- sadly that tumor was not removable, and we have to wait till gamma knife..

Right now Regina is "sleeping" , she cant move, she cant talks. Mashines are breathing for her> Her vital signs are great.

WHY you ask? WHY is she paralyzed?( sp?) But because she has HUGE hole in her brain HUUUGE empty spot, that even minor movement can fill it with blood and kill her.
She is not feeling any pain, she can hear us, but she cant move.. She is true SLEEPING BEAUTY right now :)
Tomorrow she has one more MRI and then most likely they will start waking her up. PLEASE hope that she has no major side effects from this surgery.

It is very hard for us to see our girl like this, but we are hoping things will be better tomorrow :)

Love you :)

Surgery Tomorrow

Regina is doing Ok right now. She had few headaches and gets tired very easily.
We have to be in CHOC around 10 AM, but her surgery is scheduled around 12 PM. Poor her, she can't eat anything before surgery. That will be challenge tomorrow.

Anyway, myself I am getting nervous and hoping that everything goes well tomorrow, and REgina wakes up able to walk and talk . :)

Talk to you soon.