Tuesday, December 30
I know, I should not be smiling, but why not? Pathology report was what we expected.
Diagnosis. PNET with extensive ependymal differentiation. So it is her "regular" tumor(s).
At first her surgery was scheduled on 5th, but few hour later we did scheduling, we got a phone call from Dr. Loudons scheduler and it was changed to 6th of January , 2008.
Since I am Ortodox ( I do not practice "my Religion"), Reginas surgery is on day of Russian Christmas ( 6th of january) or in Greek ortodox - ephipany.. IT is very importan day in many cultures and I believe that Hope is with her:) And I know Dr. Loudon and his OR staff will do best to keep her comfy and save her.
Regina will be inpatient in CHOC for 4-5 days. She already is telling me, that I should let her friends know where she is, since she wants "little" PEOPLE to visit her ;)
I hope you guys have great December 31st, and even better year 2009 :)
Sunday, December 28
Went to Big Bear today because Regina wanted. Up on top she started crying and told us that her head hurts a lot.( it is 7000 something feet above sea level). So after 30 minute snowplay we started driving back. We took couple of tiny snowstops because the lower we got, better she felt. BUT those snow stops were big mistake. We started driving home 4 PM. WE got home 9 PM. DO YOUR MATH. 100 mile drive took us 4 hours. FUN huh. IT was bumper to bumper drive . UGH.
Anyway, REgina managed to have some fun finally, and now she is in bed and feels great :)
We see Dr Loudon tomorrow to discuss whats up with her scans and most likely schedule REginas Surgery :)
Wednesday, December 24
"Once again we find ourselves enmeshed in the Holiday Season, that very special time of year when we join with our loved ones in sharing centuries-old traditions such as trying to find a parking space at the mall. We traditionally do this in my family by driving around the parking lot until we see a shopper emerge from the mall, then we follow her, in very much the same spirit as the Three Wise Men, who 2,000 years ago followed a star, week after week, until it led them to a parking space."
I hope you guys are having a great holiday season:)
Wednesday, December 17
After that she was wheeled to surgery that lasted about an hour.. IT was scheduled to be 2 hours, but I guess her case was not as hard as dr thought. After surgery Doctor Loudon walked into short stay unit waiting area with a big confident smile - I thought that he was there to tell us that Regina is going to be operated next.. BUT no, He told us that REGINA IS DONE, and everything went GREAT:) HE is very exited and enthusiastic about Reginas upcoming surgery. HE thinks that it is "not Right" to give up now. And he is amazed about reginas mental state and physical state.:)
Right now Regina is Resting in CHOC. She was doing ok, but pain meds started to wear off and she got a headache. Nurse gave her some Morphine for it :) After that she felt great again and started eating her Carls Jr. Chicken stars. and Cupcake. Also Police officers came by and gave kids gifts:) MORE barbies ;).. And there was Christmas dinner on sixth floor . As silly as it may sound, but we had a great day. I am so proud of Regina, it is sickening..
We also met one of our CHLA friends in CHOC. Kind of funny, since we never met anybody this way. lauren had her third stem cell transplant and got horrible infection. HIGH fevers blood pressure problems.. etc.. Those who have had neutropinic children know what I am talking about. She is doing better now.
Check out their website:) She also needs some good thoughts.
Anway. Biopsy results will be available on 5 days. Dr Loudon wants to do surgery as soon as possible after results are in. So do we.
PS. Thank you for Christmas Cards. I just sent mine out. If you do not receive one from me, it means I ran out of them... :(:(:( Accept my apologies :)
Tuesday, December 16
WE are going to CHOC tomorrow 6am. Regina has Preop MRI under sedation, and then she will be wheeled directly to operation room, where they do biopsies. After that we stay to short stay area, wherever that is.
PS. Keep your fingers crossed. REgina has cold right now. WE did get preop clearance from her pediatrician, but anesthesiologist will be the one who makes a last call IF Regina is set for OP.
I am nervous.. scared and stressed. AS much as they tell us that it is"minor and safe" procedure, I don't care. THEY insert needle into her tumors and suck out some samples... AND it is done by computers. SO, computers will pretty much cut her"stuff" out, and doctors just HIGH FIVE next to computers... OK..
WE are going to CHOC right now to get Reginas labs done.:):):):):)
Talk to you tomorrow or on friday after surgery.
Sunday, December 14
Wednesday, December 10
Regina is not feeling very well. Today she woke up with headache. I decided not to send her to school. Instead I took her to Disneyland...
She did get tired couple of times ( not like her ), and we had to rest.
Now at bedtime her headaches are back. :(:(:(:(
Anyway.. Just send your healing thoughts to her way. She needs them.
Saturday, December 6
We had such a great day today. Regina is part of Starlight Foundation Great Escapes program. They have awesome events for Terminaly ill children who are on treatment currently, or even off treatment. Anyway. Today we were invited to Beethovens Big Break Movie Premiere in Universal Studios. This movie will not be available in Movie theaters. They only have few premiere events in couple of movie theaters. This time almost the whole cast was present. Actors, actresses, Director, etc...
MOVIE itself is FUN. Funny. Kind of like Home Alone 3. Silly jokes, great laughs. And happy ending. SO , if it comes out on DVD, please get it to your kiddos. :) They will love it too:) Check it out :)
THANK you Starlight foundation For inviting us.
After that event we hurried over to our friends house to Celebrate Christmas. It has become a tradition. All Estonian chicks, Traditional Xmas food and lots of laughs.
Regina is doing great. We did see REginas Surgeon Dr. Loudon on Friday. He has pretty good plan for Regina, but we still have couple of unanswered questions. He wants to do biopsy before Main surgery, to see what he is dealing with ( something to do with billions of cancer cells). He will biopsy 4 areas in her brain , and it is done by robots... Kind of cool. It will be safe procedure.
HE also thinks that After biopsy, He will be most likely to remove 80/85% of tumors with minor side effects. And if it is successful, then we have to follow some kind of Chemotherapy regimen AGAIN , because without , it will grow back FAST. And instead of 6-8 weeks we will get lot more... Up to a year. Again. NICE plan, but it Will be most likely one heck of a 2009. Not sure IF I survive it. Emotionally it is frustrating to wake up every morning and check on her to see if tumor side effects have showed up. UGH...
That is why, I am kind of giving UP asking lot of questions from doctors. I just need to know WHAT they can do, and I don't want to question their motives or WHY they are doing it this way , or that way. Right now there is no right or wrong. outcome of whatever happens is unknown. Weird world. AND to think I am just 30 years old, and I have been doing since I was how young again?.... I have done it for 5 years. .. ... This has been my job. My lifestyle. Sometimes it just does not make sense ( when My selfish self Is talking). You know what. I want ME time to. Just me, ME, ME... I know way to much about brains, and brain tumors and death, and suffering, and blood types, and genes, and hormones, and genetic testings, and chemo therapies,and different types of scans, and medications... BLAH. AND what is reward of my job again? Still, WHAT IS IT?? More suffering, HOPING that things get better?
Sorry. I am just angry of Cancer. I really am. Sad part is that I am afraid that One day I will be the one who has cancer... ( family history)... I don't know IF I would have so much thrive to fight. I don't know...
Thursday, December 4
I have few unanswered emails in my mailbox, that want to know how Regina is doing.
THIS writer is on strike. For a while I just got sick of this whole ordeal .
What should we do, what decision to make, when, how.. ugh ugh.. JUST way to many unaswered questions.
Yesterday we went to see Reginas oncologist Dr Dhall .just a checkup. We were discussing some chemo options and some drugs that they are willing to dry , if we decide not to do surgery. OR if we do surgery, then start some Trials in CHLA ....
Then we contacted St. Jude . I emailed Dr. Gajjar about Regnas situation and he was nice enought to email me back and let me know that he is looking into what is going on in St. Jude. Yesterday he emailed me and told me that they have NEW trial coming up soon. They havent started it yet, but it might benefit Regina. In a meantime we have to get ready with other paperwork..
NOW--- I think because I have opinions from 3 different doctors, I am going grazy. MY mind has to multi task. ALl of us have to multi task .. TO MAKE that ultimate right desison is hard. I have ( we have) to figure it out what is that right desision I have to make in Reginas behalf... UGH... Not a pretty situation.
Also, I am really easily irritable. REALLY easily. So If you talk to me about something and I just blah blah blah blah blahh.. Just ignore me... I really do not have time for BS right now, and small issues just drive me insane. Just be patient with us:)
PS.... Regina is doing good:)
Tuesday, November 25
I called to CHLA today. Reason for my call was Lumbar Puncture results. SO far it looks good, BUT , I was told that there is one more person who has to look at them and write a signature that it is all CLEAR. SO we are hoping , there will be no change tomorrow.
Also, Reginas oncologist called late last night. We know that he is strongly against surgery, because it is not easy surgery. He also advised us to think again . Because surgery may bring more bad than good, AND if surgery buys us only 5 more months instead of 6-8 weeks. It could take reginas mobility away completely, IT Could make her blind, IT could take her speech away, She could die and instead of 2 months we only get 2 minutes..
He also told us some great guestions to ask Dr Loudon.( ( reginas surgeon). We have been playing phone tag past 2 days. Hopefuly we get a hold of him soon. )
REGINA is doing great:)
AND I am wishing you all Happy Thanksgiving. We have lot to be thankful this year.
What are you thankful for?
Monday, November 24
I was supposed to take Regina to CHLA . She has Lumbar puncture procedure . BUT on my way there, something happened to my car ( OR I thought so). So I called NICK and told him to get his car ready , because I am coming home. It was 5 AM.
NOW, He and Regina are In CHLA.
PS( NothINg is wrong with my car. WHAT I thought was engine problem, was actually WAL MART bag stuck under my car and making those flapping sounds... OH, is that a hint that I should start shopping in Wal Mart?
ANYWAY, lets just hope that LP is clean.
Saturday, November 22
I want to thank you all who stepped by and said hello to Regina:) She enjoyed being center of attention and was very proud that SO many people care about her.:) AND I enjoyed my "kitchen Time".. Food just makes me happy :):):):):)
Today, Regina is doing great :) She is spending a night at her friends house:) I know they are having tons of fun:)
I uploaded ALL pictures ( since i did not have time to sort them out to my CaliWitch album.
Wednesday, November 19
I do have some news for you. Nothing SUPER exiting, but still.
We saw Reginas Surgeon Dr. Loudon last week. He told us... WITH aggressive surgery and gamma knife combination there are some things he can do.BUT with side effects.. (Right side weakness, loss of speach, or even death- IF surgery goes extremely wrong. Right now Surgery is our only option to buy more time to be with her.
Today we went to see Dr . Dhall and to get Chemo. WELL, We did not get chemo, but saw Dr. Dhall. HE is worried about surgery and it's side effects. He told me that IF we know and are willing to accept those side effects, then we should proceed with surgery. BUT we have to have an agreement between us and Reginas neurosurgeon, to make sure he respects our wishes , and does not go ALL THE WAY, because too agressive surgery can have devastating side effects..
WHY we did not have chemo. WE WANT TO HAVE SURGERY. AND Dr Dhall believes that it is safer to stop AVASTIN and VP-16 righ now, because Reginas body has to recover from chemo, and her counts have to be up during surgery to prevent bleeding..etc, and other side effects. BUT, it also means cancer gets chance to grow.
WITHIN this 2 week period we have to get Lumbar puncture done, to make sure there are no cancer cells swimming around in her spine. IF THEY ARE, it means, We are done. NO surgery,, jsut waiting for the end... SO we are hoping that spine is clean ( FINGERS CROSSED).
ALSO we have to get PET scan done . Hopefully soon.
PET scan, is a type of nuclear medicine imaging
Till then, we just have to sit tight and hope things do not take worse turn.....:)
PS. Regina is doing great and feeling pretty good:)
Monday, November 17
I feel presence of these wonderful Angels.... And few days ago-- I was reminded that THERE still is hope.... But I will tell you more, when we are 100% sure..
Beings of Light
During each of our journeys, there are those inevitable moments when someone comes into our life at precisely the right time and says or does precisely the right thing. Their words or actions may help us perceive ourselves more clearly, remind us that everything will turn out for the best, help us cope, or see us through difficult situations. These people are human angels – individuals designated by the universe to be of service to those in need at specific points in time. Some human angels make a commitment before their births to make a positive contribution to the world at a particular moment. Others were chosen by the universe. All human angels, however, come into our lives when we least expect them and when we can most benefit from their presence.
A few of the human angels we may encounter are in professions where helping others is an everyday occurrence. But most of them are regular people, going about their daily lives until called upon to be in the right place at the right time to bring peace, joy, help, or heal someone when they most need it. You may have met a human angel in the form of a teacher who gave you a piece of advice that touched your soul and influenced your path. The person that momentarily stopped you to say hello on the street, delaying you long enough to avoid an oncoming car or a collision, is also a human angel. They may offer nothing more than a kind word or a smile, but they will offer it when you can draw the most strength and support from their simple action.
You may be a human angel yet not know it. Your fate or intuition may guide you toward other people’s challenging or distressing situations, leading you to infer that you simply have bad luck. But recognizing yourself as a human angel can help you deal with the pain you see and understand that you are there to help and comfort others during their times of need. Human angels give of their inner light to all who need it, coming into our lives and often changing us forever. Their task has its challenges, but it is they that have the power to teach, bring us joy, and comfort us in times of despair.
Thursday, November 13
One way is just be patient with us, and don't be afraid to talk about FUN things in life :) It does not have to be about Regina all the time :)
The other way is to just drop in and say HI. Come and play with Regina after school for few minutes. It is up to you :) She is really into fashion right now, and likes to play around with Large pieces of fabric to make " gowns".
Also fund was established for Regina last year. It is through Talbert Foundation. Every little bit helps. If you know anybody who would like to donate some funds to Help with Medical bills, please pass it to them.
There are many more ways you can help. But it is up to you how you want to do it :) Don't be afraid to suggest something. IF Regina is having Fun, we are happy :)
PS. Thank you for emails, comments, notes. I appreciate every one of them. :)
Tuesday, November 11
Friday, November 7
Wednesday, November 5
To be honest, I am tired of this cancer talk. UUUUHHH. Yeah, you heard me. I am over it! DONE!
Well, I want best for Regina and right now what I want is not available for her... CANCER FREE LIFE !!!-- It is not our near future..
My dear friend Kathy came all the way from San Diego to be with me in CHLA today..( THANK YOU very very much) and She saw Regians scans, and saw how boring my hours in CHLA usually are... But she knew it before she came with me.. She is one of those LUCKY St JUDE moms. ;)
BUT, Tumors have grown and A LOT. And right now we , once again, we do not know how much time we have with Regina.. NObody knows. Regina has a mind on her own and only she knows. :0 ) We just have to deal with it:) So rest of you just have to be really nice to her and send her lot of junk ;) I do not mind it at all ... Whatever makes her happy, SHE HAS TO HAVE IT!!
If she feels like not doing her home work- FUCK IT, WHO CARES!!. IF she does not want to go to school- IT IS NOT END OF THE WORLD. If she wants to stay up late-- SO???
So be patient with us and send your well wishes to her way.:):):) We love you guys:)
Tuesday, November 4
After Receiving pretty disturbing news earlier today, I decided that I am going to take kids to Disneyland for couple of hours.
We went there 3pm. I AM SO GLAD WE DID IT. Disneyland was awesome today. NO LINES nowhere( well, most waiting we did was 5 minutes). We did 5 rides and then just walked around.
I wish I had left Gabriel home, because all i heard was whining and complaining. I know he needs attention, but behaving this way , he only gets "bad" attention from me.
Tomorrow ( wednesday ) We will spend some fun time in CHLA... VIsiting doctors, getting chemo, --- you know, same old same old... Kind of what our life has been past few years....
Also-- Notice to my neighbors ( who have dogs).... PLEASE DO NOT LET YOUR DOGS CRAP IN MY FRONT LAWN!!! I KNOW WHO YOU ARE!!! OR IF YOU DO, clean up after your 4 legged friend. I have enough "crap" in my life right now, and feel no desire to clean after yours...
I could not wait any longer and emailed Dr. Dhall... News were what I expected... But I was hoping. ... ... ...
I regret to say that the MRI is consistent with further progression (increase in size of the previously noted lesions).
We will meet Dr Dhall tomorrow and discuss what should we do next...
Sad, sad , sad, sad I am fuckin' sad and angry right now...