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."
Regina is doing great:) She has headaches once in a while, but other than that she is fine.
I hope you guys are having a great holiday season:)
I hope you guys are having a great holiday season:)
Wednesday, December 17
She did very well today. Pre surgery MRI was short only 15 minutes and AGAIN, everybody was amazed how well Regina follows directions. SHE WAS sick, coughing and runny nose - but during 15 Minute MRI she did not cough at all.:)
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:)