Friday, January 30

UGH.. that is all I got to say.


You know that I always tell you how it is, and I never sugarcoat the truth. I wish I had some better news for you but I don't.

Anyway, sad truth is.. IF gamma knife radiation did not work- REgina has max about 10 days. Brain stem tumors are not FUN and EASY tumors to treat or cut. And they take you down FAST.

We went to CHLA today to consult Dr. Dhall. We have not many options.. JUSt some, to MAYBE keep regina here little longer. . There are 2 things to do now- NOTHING, or Hit her with pretty serious chemo. NOTHING IS STUPID. Sorry. I understand that life quality is important. But we just had surgery, and gamma and to do nothing is just S T U P I D.
Other way is... Cisplatin, vincristine and lomustine ( CCNU). side effect for this chemo is low blood counts and possible infections which means more hospital days... It took me while to convince my DH to go THIS way. He was against this chemo. Originally we were told to start different kind of chemo, but that chemo is WAY to soon after surgery. Maybe, if in 6 weeks Regina is still here, we can try that other chemo. Keep your fingeres crossed.

NOW. ON monday I am going to take Regina to CHildrens hospital of Los Angeles. We will be admitted maximus of 24 hours. After that we will go home, and visit CHLA occasionally for other chemo drugs. Home healtcare nurse will come to our house and draw Reginas labs. And if her labs drop, then we have to go to CHLA for some blood or platelets.

Right now there is no right way . I hope that things tak better turn soon....

THANK YOU FOR YOUR SUPPORT GUYS:) YOU MEAN A WORLD TO US :) Myself I am doing best I can. It's not easy but what else can I do ??? :)

26 comments:

liina said...

Thinking of you all...

minu-hetked said...

Ma loodan ja jäängi lootma, et kõik võtab siiski positiivsema kõla:(
Palju jõudu teile!
Suured kallistused teile kõigile.

Joanna said...

Diana -- my whole family is thinking of you and your family. Please try to take care of yourself, too, and remember that you have friends all over the world who are sending you love and support and waves of good thoughts for you. I wish I could hug you right now, and tell you how much ... well, just how much we love you all. You're like family to us, even though we've never met IRL. Big hugs and all the love in the world. Kiss your sweet baby girl for us. <3 Joanna

Trulla said...

Hang on there!

I'm so sorry to read about how cruel life can be to such a nice and loving family like yours over there.

Steph said...

Hugs Hugs Hugs


:(

Karyn Paulin said...

I have followed your story for a very long time and have never commented. I have just marveled at your strength and the strength of your family and especially of your amazing daughter, Regina and have prayed for all of you. You made a decision long ago at the 40+ tumor mark to keep fighting when most would have given up. Since that time your family has had many wonderful memories that you never would have had. Whatever happens now, know that you did absolutely whatever you could, Regina fought as hard as she could and you are all just so amazing. Thoughts and prayers continuing to be sent your way from Northville, Michigan.

Old Lady Lincoln said...

Karyn and Joanna have both summed it up. I feel the same way. Have been following her ups and downs for some time. So sorry the news isn't better news for her and the family. Just know there are many, many thinking of Regina and her family. Sending happy thoughts, well wishes and love to you all.

Katrina Soto said...

Hello, Diana,
I am keeping you and Regina close to my heart. Please Please tell Regina that I miss her in the math group and that Will and Jillian (the other kids in the group) miss her, too, and send their love along with mine. She is such a dear child.
Katrina (Mrs. Soto)

Anonymous said...

I am praying for Regina..I am looking for miracles. They CAN happen
Carolynn

GraceBeading said...

Hoping, praying for miracles for Regina and strength for the whole family.

Hugs,
Grace

Kathy said...

The tumor is fast-growing. Radiation and chemotherapy work best on fast-growing tumors.

So I pray this works for her.

Hugs to all of you.

Anonymous said...

Know you are in our every thought.

-Betina and all

Anonymous said...

Diana, I am so very sorry. Please know I am keeping you, Regina and the rest of your family in my thoughts.
Thank you for keeping us updated. I'm sure there are times when it's not easy to do.
~Lori

Jinsong TAN said...

I am praying for Regina. I am looking for miracles. They CAN happen.

Ave said...

whatever happens, Regina has an amazing Mom and Dad and Brother and Regina will be always here...Thinking of you, Ave

Aimee (from Tulip's World/ChemoAngels) said...

As always, your family is in my thoughts and prayers. She is an amazing girl and she has an amazing family. ((((HUGS))))

Anonymous said...

My heart goes out to you. We love Regina and will continue to think positive thoughts for you all.

Karen Foley

Angelica said...

Know that you are doing what is in your heart the only option. This is you baby and you will fight for her, as most mom's would. We are thinking of your family and praying for her to pull through!

The Gutierrez Family
Angeica, Rich, Matt and Andrew

Rachel said...

Diana,

I am praying for you guys. I really pray it works.

Anonymous said...

May you enjoy your time away from the hospital. Make every second count! Hug her and squeeze her tight!

Leah said...

Joanna said it perfectly. I am praying. :(

Dawn C. said...

I am praying for you and your little girl. I am so sorry.

Anonymous said...

I prayed for Regina today in church. I pray for her complete healing.. even if just a bit longer here on earth with such a beautiful family who loves her so dearly.
Carolynn

Jackie said...

Regina is always in my thoughts, Diana. I think of her (and you) often. I've never known such a strong and brave little girl.... and of such a strong and brave mommy. Lots of love, hugs, and positive vibes .... Jackie and family in Chicago... xoxo

mutukas said...

Valus on lugeda. Pidage vastu! Milline julgus ja tahe teie kõigi poolt, olge tugevad ja võidelge iga hetke eest. Milline imeline laps Regina on!

Anonymous said...

Diana and family,
Fight on! You've come this far, there is no way to stop now. Our family is sending prayers and postive thougths your way.

The Skupiens,
Steve, Tracy, Brenna, and Luke