Wednesday, June 27

Wednesday, june 27th, 2007 . Update.

Our Family 5 minutes before surgery, june 22nd, Also GABRIELs 6th birthday.

(june 24th, 2007)
(Regina, Tuesday, june 26, 2007)

Pathology report confirmed- Recurrent PNET. I have been been reading records today, and more I read more it hits me. There is really nothing much doctors can do and all we do is hope for a miracle. I also have been staring reginas brain scans and i am still in disbelief. Her left frontal lobe looks completely messed up, picture is devastating, but REGINA acts and looks very normal and aware what is going on. day after her surgery she was ready to give up. We saw it in her eyes. She was just done fighting. She was limp and tired and not ready to fight. But today she is completely opposite. She woke up smiling, happy, singing silly songs, making up songs, laughing , making stupid jokes and laughing out loud. She also told Nick that she does not want to become angel yet. She wants to grow up to be big girl ...... Is it possible??

nick has been working hard all day today gathering information about different kinds of medications and treatment plans.

There is NO cure for her right now, but there is possibility to make her live longer few months. Oncologists believe that since her type of tumor is very aggressive , fast growing, there is possibility that it may also respond fast to chemo. We are considering some kind of chemo, but nothing very toxic. I do not want her to suffer as much she did during St Jude chemo. So hopefully we can start with something on monday. Again guys. There is not much doctors tell us. They are also refusing to talk about " numbers" , survival rates. And emphasize telling us- THERE IS POSSIBILTY to make her live 4-5 months longer.
We were told that without treatment she would not live to see September. But would it not be cool if she could live to be at least 8 years old??

ALSO!!!! THANK YOU TO YOU ALL WHO HAVE EMAILED ME, CALLED US, SENT CARDS, GIFTS TO REGINA, WELL WISHES, ENCOURAGING WORDS, BROUGHT DINNER, SENT PRINCESS TO REGINAS ROOM, EMAILED US INFORMATION ABOUT ALTERNATIVE MEDS, T H A N K Y O U !!!!!!! Your support means lot to us, and know, even thought I do not respond right away, I appreciate everything you do . We try to spend as much time together as family and I may not answer your emails and calls in timely matter.

AND our house is always open to you guys. If you feel like coming over to see us, do not think twice. Only rule will be- you have to self serve this time ;) If I feel like I may make something nice to you , but do not be hopeful...

ALSO. May I ask one huge favor from you :) I may sound rude and selfish, and maybe i really am... But I have to say it. Over these past few days Regina has received whole bunch of cute and cuddly toys. I swear , they are CUTEST TOYS EVER... But I have very hard time with this. All I could think about is- what happens to these toys after she passes away??? I am one of those persons that can not throw things away,... everything will be reminding her positive way, but how much is to much??? You know what I mean... I am not STOPPING you for doing this, and I know that every time she receives something it brings a smile to her face. Oh, she is so But oh well, it is ALL about her right now, so... I just have to find a way to deal with it...

So guys... Far and close, tall and short... stay tuned. It is very hard time for us, every morning we wake up and she is here with us, makes us cry happy tears, every night we fall asleep, we cry because we just celebrate another successful day. May there be another 50 years full of successful mornings and evenings....


Kathy said...

She looks great today, swelling way down in her face and eye and that big gauze bandage off her head.

She's writing her own story. We can all guess at the plot and the ending, but it all really comes down to her.

Steven and I may come tomorrow, I'll call you.

lennuk said...

Diana, thanks for the update!
Regina looks so cute on June 26th photo! So smiley and ready to fight and get all better!
Thinking about you a lot.....

ellen said...

I have kept up with Regina's story through Kathy Bell, and I am so saddened by this latest devastating development. I'm praying. God bless you.

Ryan said...

Reginas blog was the first blog I ever saw after my son was diagnosed with his brain tumor and I have followed it ever since. She is beautiful. Her site inspired me. I'm so very sorry for what is happening. I will be praying for your little girl and your family.
mom to Ryan
JPA left frontal lobe