Wednesday, September 10

Today was weird and long day in CHLA. We headed out around 8.30 AM and it took us 2 hours to get to CHLA. 3 car accidents on 5 and they were all on car pool lane… hate when that happens.

Then we got to CHLA and surprise, surprise… there was no parking in CHLA. There are 2 parking lots and valley parking. BUT LOTS were FULL. At that point I rolled down windows and asked- WHAT NOW, my daughter has chemo and MRS… what the heck do you think I should do?? Parking attendant just told me – I don’t know… Find parking. I wanted to get out of my fucking car and shake her till she apologized to me for telling me this… Then after few more circles and few more PARKING LOT full signs.. I pulled next to hospital security dude..( very handsome African American dude BTW).. And I started explaining him that I HAVE TO GET INTO CHLA RIGHT NOW. I was not even yelling at him, when I started telling him my daughter has chemo and MRS I just started crying and asked him—You tell me, what I have to do? We are patients and we can’t get in. It is never been this crazy before? What is going on. For my surprise he started apologizing to me. He told me that he understand how frustrating it is to me, and he asked me to pull aside and wait for few minutes till he checks parking garage… Few minutes later he told me to make another circle around and he will open parking garage for me.. I started crying even more—thanking him like I never thanked anyone before… and crying like it was my last day on earth….

TO be honest, everything is just building up inside.. Today when we got back all nurses were like- DIANA AND REGINA, YOU ARE BACK…. Child life workers were happy to see us, few other people……. And I was glad to see them tooo…But then questions started HOW is Regina… and I started crying again… I DON”T know how she is… I wish I knew, but there are those 3 spots that are present in her brain and I don’t know what they are…. Waaaah, waaah, waaahh….

Luckily we were in CHLA and it is OK to cry in hemo/onc floor. Then we found out that 2 more of our good friends have relapsed- both with Medulloblastomas… And this was their second time … I got even madder then. WHY??? What have these kids done to this world? Truth to be told- real sufferers are us, PARENTS. Feels like every one of our “sins” has to be punished in a very manic way… Cancer sucks… and I have only one questions to those who have lived with it for 20-30-40 years… Do you ever get over fear that IT might come back? Or you just forget about it and live happily ever after?

ANYWAY. We are in CHLA now, Regina had Labs, urine test, Avastin

MRS is scheduled to Sunday 1 PM. Till then we just have to stay sane…

5 comments:

Kathy said...

Sometimes it seems to me like that after you suffer some huge tragedy like your child gets cancer or something, the world should give you a break.

But it doesn't that work that way.

Still, there are nice people like the security guy.

Why no MRS today? Are you glad they postponed it?

Sleeping Beauty said...

Oh yeah... I don't think I could have handled any more stress today. Dr Dhall and Finlay tried to get Regina in today. WE GOT TIME 7 PM, but "contrast people" are not there that late... And to tell you , this MRS is only 15 minutes short. I am kind of getting scared walking around In CHLA. PEOPLE know me there.. lol, and my good and patient reputation is on stake...

Kathy said...

Have you noticed that every time you write in your blog you are looking for a job, something goes wrong with Regina?

Not that I'm superstitious or anything...

Sleeping Beauty said...

I know what you think. i noticed the same pattern... I guess, my job is to sit at home, watch TV and drink unlimited amounts of red wine ...

Kathy said...

Don't forget the cheese.