REgina scared me a little today. While we were eating lunch in CHLA , she told me her head is shaky again( thats how she felt before she relapsed). But I think this shaky head was due to spinal tap she had yesterday... She is fine now.
We saw Reginad Dr today. And he is not wasting any time. lol
Regina started her chemo today. she is on Oral etoposide for 10 days ( 40mg day). THis time it is liquid form and it tastes discusting . NO I did not taste it, I was told it tastes discusting).
10 days oral etoposida.
on Day 6 we add Temodar. She has to take temodar for 5 days. . Then on 17th and 18th of december she has IV chemo Thiotepa. Thiotepa is really toxic. It is so toxic that Regina can not have ANY tape on her body. She has her central line dressed with tape. WHILE on thiotepa we have to remove ALL TAPE, bandages etc because if we dont, her skin will peel off... Then she has 2 days brake (19/20 dec). And on 21st she will get her first round of Stem cells back. Dear friends. That means. Reginas Immune system will be DOWN DOWN DOWN and most likely we have to stay Away from all of you...:( She will start Gcsf ( immune system booster on 22nd of december and we are hoping that her ANC will be back by 31st of december.. If not, we may end up spening our new years eve in CHLA.
It is all very very exhausting and time to time I walk around in a bubble, not noticing that someone is calling my name, or telling me something. Please forgive me.. I am just tired .
I am so glad that Gabriel is such a great easy going kid. It warms my heart when Mrs Miller says something good about him. I really do not spend lot of time with him, teaching him, takinkg care of him. He is doing everything by himself . He is such an amazing kid and always knows how to make us laugh with his silly and sick sense of humor.( kind of like mine). I hope he does not grow up to be serial killer ( srry, I heard that kids who have tough childhood, and boys who do not feel loved by mothers end up being psychos.... ) . lol...
Take care and have fun holiday season.
5 comments:
I wish only the best for Regina and you. Plus her Daddy and brother. I'm sure Gabriel understands all his sister is going through. I hope this all goes quickly for all of you and she's back home feeling wonderful in the new year. Yes, not only is little Gabriel an amazing little boy, his sister Regina is super amazing, along with her parents. Good luck, thinking of you and always remembering Regina in my prayers.
Tere!
Kas väike Regina räägib eesti keelt ka? Ma mõtlesin talle jõuludeks mõne ilusa kaardi saata :)
Elan teie tegemistele kaasa ja loen tihti seda blogi.
I am so glad she is getting the stem cells!
Healthy vibes~~~
I am sure Gabriel understand. I found that children who grow up with cancer in their family are sweet and compassionate and lovers. He knows you love him- he knows because he sees how much you love Regina and he knows if it was him it would be the same fight! He fights for her too- he understands.
HUGS and may 2008 be nothing but healthy healthy healthy!!!!
I came across this blog by accident; I wish you all, and especially little Regina, the best of luck. God bless you. :)
I hope Regina is doing well.
I'm flying to Sacramento tomorrow night, then driving 100 miles to Chico to talk about St. Jude to a bunch of building contractors for the Dream Home Giveaway.
Steven just can't go, middle school is really challenging for him this year and we try to absolutely minimize any time away.
It seems like a really long way to go for lunch, but how can I say no?
Hope Regina is handling that chemo OK, it's amazing how well she's been tolerating all those nasty drugs.
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