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...