Thursday, May 21

Onco. Update:)

We did see Dr. Dhall on Wednesday in CHLA. We did not check her scans, but I got a copy from hospital and when I feel like it , I will check it out myself and post a pic. for you guys :)
It's not fun being a mom to a 9 year old cancerpatient. 5 Years ago ( on 28th of may , REgina had her First brainsurgery) and we thought that that was it. NO MORE CANCER :) WOHOOOO. And we were at peace. Not really worring much. THen second surgery ... HUH, peace was taken away but we managed to find it ... third and fourth surgery just crushed all hope that was left, and I am not at peace, I am relieved that tumor is stable, but I am so done with living DAY by DAY hoping that TUMOR NEVER starts growing again. I don't want to worry about it, .. But things are different.
Dr Dhall thinks ( but is not sure) that tumors are sensitive to Chemo. And "smart" way to go is to try some more chemo... Even though Reginas body is tired of chemo, she did recover pretty nicely again. So we are giving lower dose chemo one more chance. 3 different drugs. Once IV one ( VIncristine) once a week for 3 weeks in CHLA. and 2 oral drugs . CCNU - only once, and then Procarbazine fpr 10 days. We see how she does. IF it does not affect quality of her life, then we will give one more round but little higher dose ( 15 days).
I know , we can't keep doing this forever. Some of you are getting frustrated with this, and are done with cancer crap, but this is OUR life. My desisions are based on HOW well REgina is doing. Yeah, I do complain once in a while. WHO WOULD'nt. WE all have issues , we all get pissed off once in a while and need to vent.. Sometimes I listen to your issues and stay neutral, sometimes I just don't.

Anyway. More low dose chemo. MOre Labs, MORE MRI's, MORE this n that. AND if it prooves to keep her alive and does not affect her Quality of life , and she WANTS TO FIGHT WE DO IT AS LONG AS IT TAKES ;0) capiche?

Regina went to School today and she lasted all day :) Again, her classmates and friends were very exited to see her, they greeted her with hugs and WOWOW REGINA happy yells. And more HUGS, and more REGINA yells:) She was happy. I could see it in her eyes.

We also want to thank you Third grade Teaches for a awesome surprise :)


Anonymous said...

You do what you need to do. You are living every parents worst nightmare. you are a very good mommy and will continue to be. You will have times when you are tough as can be and weak as can be. Your life is hard and ruff and also very lucky to have such a wonderful little girl in your life.
Stay strong and do what is best for your little girl and family. It is your guys life. Don't forget to take care of yourself too! with much love

Anonymous said...

De-lurking again...
As a cancer parent the one thing I learned is that no one has the right to judge the decisions you are making on Regina's behalf. It's your reality and if others don't like it, are tired of it, or generally have problems with the way things are going they can stick it in their pipe and smoke it, to quote my grandmother. You're doing things the best way you know how: no one knows what's best for Regina but you. You're doing a great job Diana, don't ever let anyone even hint that you're not.
Mom to A.,
Dx hepatoblastoma 1993
angiomatoid fibrous histiocystoma 2006

Anonymous said...

Couldn't agree more to the first and Lori's comment. Just fight! That's how you win the battles.
Biggest Hugs from Chicago,
Maris & Co. :)

Leah said...

I agree. Don't worry about what other people think. They aren't in your shoes. You do what you have to do. Continued prayers.

Katrina said...

Of all the things you have to worry about, other people's opinions should not be among them. Screw 'em!! No one forces anyone to read your blog. I admire you for being frank and for (metaphorically) standing naked in front of us and baring your soul. Perhaps it is what lets you hang on to a shred of sanity!

I was so thrilled to see Regina in school Friday. She was in the reading group in the morning (not my group) and I was looking forward to seeing her in my math group, but her music class met during that period, so my joy had to be delayed! I look forward to seeing her on Tuesday. I am rearranging the math program so that she will not feel she has "missed" anything. I want to make sure she fits right in, as she has in the past, and doesn't worry about anything. Lucky her, we are just finishing the hideous fraction segment!! Next is decimals (much easier - for the kids AND me LOL) and then measurement. So, we'll be having a lot of fun.

Love to you,
Katrina (or, as Regina knows me, "Mrs. Soto")

Anonymous said...

No one has a right to say anything to you. What your family has to go through is more than anyone should have to go through. I admire your strength and your daughter's strength. When I found your blog months ago it changed how i lived my life. You and your daughter are amazing people. Thank you for sharing your life.


Denise Martin said...

The nerve of people never ceases to amaze me. Noone should ever fault you for doing everything you can do to save your child. You do what you feel like is best for your child and ignore those who don't support you in that.

Kathy said...

Life wouldn't be much fun if I couldn't criticize your spelling and tell you what to do :-)

Sleeping Beauty said...

OK Kathy;) GO ahead--- gimme what you got???