Sunday, March 3, 2013

Readjustment Period

These last couple of weeks have been a whirlwind!  I'm a little run down but I have to admit, I'm loving every minute of this "readjustment period".  We're all finding some kind of routine with school, work and everything else.  I've hardly had a moment to update the blog but have recorded thoughts (with the help of Suri) along the way.  


The past two weeks or so has been pretty awesome. The girls are starting to go to school more and I am starting to work more.  We are finding a new routine. I'm actually packing lunches for school (and not the hospital) and I can't explain how nice this feels. I do miss my girls when they are at school.  The first hour after I drop them off is great..."I'm free...what am I going to do....I can do this and that and that".  The second hour I wonder how they are doing and if they are missing me.  The third hour, I start to get a little worried and anxious but reassure myself that the teachers would call me if there was a problem.  Everyone at the girls preschool, Circle of Friends has been so supportive and I know they are in wonderful hands.  Once I go pick them up, I realize how much fun they have because they "aren't ready to leave yet".  

I have been keeping myself busy; very busy. With training for running a marathon, helping plan Mama's Night Out, becoming involved with Project Collaboration, working on getting Team G Foundation up and running, and adding a few days to my nurse schedule and of course my priorities as mom and wife.... my plate is full!  Maybe I take on too much?  Um, yes, that is definitely it.  It makes me laugh and get kind of tired at the same time when I think about it all.  But there is not one thing that I would give up.  It is all that important to me!    The other day I took Bridget to an appointment I had. She screamed "I want G, I want G" and I realized a couple of things; how much she's bonded with her sister and how affected she was this past year.  I was able to convince her that G was ok and that I wanted to spend time with her and needed her awesome support. (I was going to get my annual TB test done for work).  After that, she seemed to relax a little more and enjoy the trip.  I see this when the girls go to school as well.  They just don't want to leave each others side.  They've been through so much.  Lots and lots of reassurance is definitely in order.   

Gabriella has been a ball of fire these last couple of weeks!  She has an amazing spirit and has been unstoppable...wearing out her sister, daddy and me!  We have been saying many "cheers" and she says, "I want to say the's to being free of cancer."  The other day as we were leaving a friend's house, she said to us, "I saw a shooting star tonight and I wished on it.  Do you know what I wished for?  I wished that all kids would be free of cancer."  She's an amazing girl.  

After spending some time at their cousins house and playing with the hamster, the girls have been begging me for a pet.  They've been asking for a puppy for a while now but that isn't going to happen.  Then they got stuck on the small rodent idea.  Ok, let me figure out how I can make this work.  We already have a fish tank that I take care of, which is ok because I was really the one who wanted it in the first place.  We got it for G after she potty trained and it was fun...for a little while.  Then we were trying to figure out how to get rid of them.  Ahhaa, an idea!  If they find a home for the fish, they can get the hamster!  So, we dropped the fish off at the local pet store and are in the process of making a hamster home out of the fish tank.  I have to admit, I'm using it a little as bribery...making sure they follow rules, behave well, etc. or "one more day of waiting for the hamster".  The new bribe I thought of today will be an exchange of Bridget's pacifiers for a legit hamster home...the one with brightly colored wheels, tunnels and more.  We'll see how that works out.

Brothers Nicholas, Alex with Gabriella and Bridget.
Sasha, Alex's mom, headed up a Cookies for Kids' Cancer
Bake Sale to help raise precious dollars for children fighting cancer.
Alex is our cancer fighter buddy currently battling rhabdo.

G with her friend Ava at school.

Gabriella's Post-Treatment Care....

As Adam mentions the last blog posts we went to visit a doctor at UCSF. It's not because we don't love our doctors and nurses at Packard because we do.  It's the fact that scheduling scans and surgeries and everything else has been so tremendously stressful and the Packard system seems to be adding more stress than we should have to deal with.  This comes up every time scans are scheduled, rescheduled, changed, rearranged and we feel like we are filling in the slots for their convenience, not ours.  Having Gabriella have to make multiple trips to the hospital for multiple procedures that can be coordinated on the same day is just not acceptable. It's very frustrating.  But in the big picture, we ask what happens to all of the families and children who don't make the phone call?  Are they getting less than optimal care because they don't complain and are already too worn out fighting their child's cancer?  I know I've been there.  I know I've just wanted to say "ok" because I have no more fight in me.  So, we're taking the steps to make it better not just for G but for all of the families.  
Not that I want more to do but I'd rather make positive changes than leave to find more problems at another hospital.    


As I was on my way to work the other day, I had some thoughts and had to get them out...

Childhood cancer consumes my mind these days and I wish it didn't.  I wish these kids were just taken care of. Why do the parents who are fighting so hard for their child's life also have to fight to raise funds and awareness for our kids. I don't understand. It makes me frustrated. Why are parents having to hold bake sales, shave their heads, and sell lemonade in order to fund treatments for their children... they're already fighting. Is it just the assumption that children with cancer are going to be taking care of or the idea that they should be taking care of already. It seems as though there are so many people talking yet no one is listening.  Many times I just want to bury my head in the sand because I feel like my brain is going to explode.  I've been working day in and day out to get this foundation started just so I can do my part and help raise some money for children fighting cancer.  It's a hell of a lot of work. But I can't not do it. I can't.

Team G Foundation In the Works....

Adam and I are very excited about getting this foundation going.  I can't believe how much paperwork, forms, conversations, meetings, etc. there is to complete in order to do this... but I'm motivated.  It's seems similar to the process I went through applying for scholarships in nursing school; check the boxes, fill in the blanks, write, write and write.  You really have to want it.  What I want is just to make a difference, big or small.  But it's started and we're not turning back now!  The other night, we had a wonderful dinner and conversation with Claudia and Diego, parents of Tianna Valdez.  Tianna reached out to us last summer after reading about Gabriella in the paper. She also had rhabdomysarcoma.  We were lucky enough to meet her before she passed.  I can't begin to describe how incredible this family has been and now Claudia, Diego and Mariela (Tianna's aunt) are joining us on this mission.  We often say that Tianna brought us together because she knew we would do great things.  Well, we know she is looking down on us and smiling.  

Finally able to celebrate Christmas with the cousins all together!
Better late than never!  

Please support me as I train to run the Big Sur International Marathon
 through the Lazarex Caner Foundation for adults and children fighting cancer!  
Thank you for everyone who has donated already: 
Lily and Mila (Cara), Mark and Deb, Nancy, Dalia and Bruce, Helen, Ellen, and my mom. 

Thank you for your continuous support and strength on this journey.  


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