Friday, July 27


(2003 Halloween)

( This is how my kids played in 2004)
DO not tell RMDH people that we are not there for a night. In some weird way, they hate us... Since I was in hospital with Regina, and Nick had do drive home , nobody went to RMDH house for 24 hours. THEY told me , they will give our room away IF we do it again. I am really dissapointed now. I mean, I am in hospital with Regina , Nick has to run errands, look for a job, and to top it off, I have to make QUICK run to RMDH to JUST check in once in 24 hours. I am telling you- THIS IS BS!!!!

BUT. WE are home now. Only for 20 hours or so. We got discharged. Reginas ANC is great... She got platelets yesterday and hemoglobin is looking fine also. WE also saw dentist in CHLA. SADLY regina does have HUUUUUGE cavity and one of her teeth has to be pulled out. Dr Finlay told me that as long as she is on her antibiotics it is ok to pull it out. So hopefully tomorrow we get it pulled.

We have appointment to see dr Dhall on Wednesday, and in Thursday Regina has an MRI ( late night). After MRI we will discuss what will happen to Regina. :) More chemo, or no chemo.. We hope MORE chemo. But we also are hoping for that " Silly Miracle" NO MORE TUMORS PRESENT... You never know.....

ALSO... I had my root canal done 2 days ago.... I AM IN PAIN NOW. Painkillers wore off and I am left with poking 3 way canals that are crossing my sinuses... lol


Patty said...

I'm praying for the miracle. Also hoping and praying your mouth will feel better soon.

Pray that your hubby will find a job soon.

I hope your little family has a great week-end.

Anonymous said...

Your RMH is different than our RMH in Toronto, we are allowed to be gone from the room for 10 days and still keep our room. In fact,they are quite aware that sometimes you can go home for a week, and they urge you not to give up your room, because of the waiting list. It's really weird that they keep tabs on you like that. Anyway, hope the MRI results are good. I am praying hard. Hope RMH smartens up and remembers why its there in the first place. Prayers always, CArolyn Lilly

Sleeping Beauty said...

Hi Patty :) Thank you for a great surprise :) Regina loves it :):):):):) You letter made her laugh.. I guess you know which part. ;)

They are very strict here in RMDH. It drives me nuts. Right now it is only for 25 families, but they are building it bigger and in future it will hold about 55 families. I told them that sometimes I DO want to go home for 2 days, because it is important for Regina to be around her friends and visit home. I was told- Sorry, you have to follow the rules or we give your room away to other families. The problem with this RMDH is, It houses families that go to other hospitals also, and they use it against us. Every time I go downstairs to activate my house key, they ask me row of questions- How many hours were you away, where is your DD, blah blah blah. And of course - I get reminder, MAKE SURE you check into your room at least once per day...

Anonymous said...

Hi Diana,
My name is Natalia from Montreal, Canada. I found your website through the Medulablastoma mailing list. My son was diagnosed with medulablastoma. I pray for your beatiful daughter and you. Please contact me if your read this, I have some e-mail want to foward to you.
Love from all of us here

Cheryl said...

Hello! Oh my difficult! I am praying for that miracle for you tonight. You are such a wonderful, devoted, loving mama...I can tell. What a lucky girl Regina is to have YOU. Hugs to you and I want to keep in touch. We are in Fresno, about 3 hours from LA. How old is Regina? We have a 3 year old and an almost 6-year-old is why I'm asking. Seems like Regina might be in between them? Hugs to you and to your sweet angel....cheryl :)