Wednesday, March 27, 2013

Results and Easter thoughts...

We finally got the "official results"  that we have been waiting for this past year...the results that couldn't come soon enough.  That G's scans are clear and the PET scan (which detects active cancer in her body) was negative, meaning no active cancer.  I don't think I've seen our doctor, Dr. Marina in such a great mood.  Granted, she's a doctor that knows her stuff and will tell you when to worry and when things are going to be ok. She definitely had a cool, calm and relax demeanor when we met...and it put me at ease.  It felt good to know we are on the other side of the hill...pretty much at the bottom.  We've made it through the hardest part and now the light is brighter than ever.  I know as we move forward with each scan (every 3 months) the light will increase in brightness and we will continue to be overjoyed with the words..."Your child has beaten childhood cancer!!  She is a SURVIVOR!!!"  I will always let these words overcome me with emotion.

This time of year last year was very hard for me (obviously).  We were only a couple of weeks into diagnosis and chemo treatments and it was Easter time.  I remember feeling so sad and so mad that this was happening.  I remember feeling so upset that my G couldn't join us for Easter brunch with my family but had to stay home with daddy because she felt sick and her counts were down.  Her hair was falling out in chunks and I remember the despair I felt...all while trying to keep my composure.

Just today, I went out and bought a ton of Easter eggs, candy, chocolate, etc. and went home to stuff them for our egg hunts on Friday at school, Friday eve with the cousins, Saturday with our friends and Sunday for the official day.  A little excessive...maybe but we have A LOT of making up to do!  I used to try and limit the candy and chocolate with more coins, yogurt covered almonds, and healthy stuff.  But there's nothing like candy when you are little and needing to live it up!

The girls are in school and thriving!  It's such a joy for me to pack their lunches, get them ready for school and know that they are enjoying lots of time with their friends.  They have taken some time to adjust and Stacey, Junie, Pam, and Sharon have all been wonderful about slowly letting the girls acclimate to the environment.  I couldn't be more grateful for Circle of Friends and how supportive everyone (including all of the parents) has been!

Team G Foundation is coming along and I can't wait to get started!!  I hope you will all join us in our mission to help support families battling childhood cancer and find less toxic treatments to ultimately cure cancer in children!

Thank you again for ALL of your UNWAVERING support!!!  We are beyond GRATEFUL for everything!!!

Happy Easter!

Sunday, March 24, 2013


Gabriella had her "end of treatment" scans yesterday and we got a preliminary reading that EVERYTHING LOOKS CLEAR!!!!!  We are beyond words with happiness and are so blessed that our little girl is beating cancer...or HAS BEATEN CANCER!!!  It's always hard to be decisive about the fact that this is cancer that we are talking about and there is a chance that it could show up at any moment...but...I just have this amazing feeling that it's not going to and that our little G is going to be just fine!  Her little body has spent the last year doing everything in it's power to heal and get rid of this ugly beast...and it has!!!  The last few days anticipating our scans have been filled with hesitancy, waiting, hoping, anxiety and tears just thinking "what if" but knowing "she's going to be ok".  We've done our best to stay busy but there were times we just felt frozen in our tracks.

G was amazing during her CT scan, which is the shortest of the three scans and done without anesthesia.  After the MRI and as she was having her PET scan done, we got to meet with Dr. Marina for preliminary results.  I know she was somewhat reluctant about giving us any final word because the final readings hadn't been done yet but we were very grateful to have heard the great results...the results we just felt in our gut were there.  They just needed to be confirmed.  As we knew and had discussed in previous conversations, the right lymph was still visible on MRI.  Most likely this is scar tissue or dead tissue that will probably show up on subsequent scans but the PET would confirm this.

We walked with the procedure nurse, anesthesiologist, and our G girl under sedation as they transferred her from MRI at Packard to PET at Stanford (down a long hallway).  I thought I had gotten used to all the tubes, probes, pumps, etc. (I mean really... I've worked with them for the past 11 years) but seeing G with tape over her eyes and an LMA protecting her airway was more difficult than I could have imagined it would be.  I had to walk into the waiting room and catch my breath.  I was debating whether or not to share it but you all have traveled down this road with us and have been incredibly supportive.  I wanted people to know what our reality looked like...the reality of childhood cancer, with the hopes that so much more can be done for our children.  I can't imagine the parents that have to see their child take their last breath.  Hopefully in our lifetime, we will see this change so no parent has to see their child suffer like this.

Adam and I stopped holding our breath after meeting with Dr. Marina and enjoyed the little jazz concert at Stanford while we waited for G to be done with the PET.  At that point, Adam pulled off all of the bracelets on his arm.  I quickly followed suit.  We talked about taking these bracelets off after her scans...when we knew she was going to be ok.  I think we both new at that moment.  It was freeing.  

We new Dr. Marina was going to call us later on in the day to give us preliminary readings for the PET.  Uncle Ronnie stopped by and we were all resting on the couch watching Alice in Wonderland.  Then we got the call...the PET confirmed that there was no active cancer.  WOW.  I don't think there was a dry eye in the room (except for the girls who were intensely watching the movie).  It took a while to soak in...and we are still absorbing the news.  Adam grabbed the champagne and we all toasted.  Our "official meeting" for results is on Tuesday but I have a strong feeling we will be hearing the same GOOD results.

We will continue to have scans every 3 months for the next year, then every 4 months for the following two years, then every 6 months for the last year.  We will still hold our breath every time scans come around because the highest chance of relapse is within the first two years.  But with every clear scan comes more healing and more distance from this vicious disease.  For now, we'll be celebrating every moment with our girls and living life without taking anything for granted!


Admiring her face painting.
Look at that gorgeous hair coming in!

Bridget showing of her butterfly face painting.

G, Addison and Bridget enjoying some beautiful weather.

Monday, March 11, 2013

Meetings, meetings

 From little things, big things grow.

We've had a lot of amazing meetings lately and have meet with some incredible people.  It seems like our world has evolved into having a meeting every day but it's how things get done.  Of course, there was the meeting with the doctors last Thursday (which I'll write about) but another meeting that really stands out in my mind and has substantiated my visions of Team G; starting to make them a reality.  We had the pleasure of meeting with two of our favorite trainers, Cliff and Sam, plus our favorite past time trainer, Ronnie (better known as Uncle Ronnie) over beers and got to bounce off some great ideas for an "actively" based foundation.  We love the idea of incorporating personal fitness motivation with raising funds for pediatric cancer.  It's something that has been there from the beginning of our journey and initiated the idea of this foundation...the CrossFit Obstacle Course Fundraiser put on by our friends and the CrossFit community.  The ideas that have formed in my mind the past 10 months are starting to make their way onto paper and starting to make sense.  It's something that everyone could be involved in to help raise money for childhood cancer.  I'm very excited to get it put together.  It just takes time but a little bit a day makes a huge difference.   

Gabriella has boundless energy these days, wearing out her little sister Bridget and us daily.  She is an eating machine and is even licking her fingers...often.  We're thinking its because things taste better now that the chemo is over and her taste buds are coming back.  It must be if her fingers taste that good.  We're still very on guard about infections and sanitizing so she's either in the bathroom every 10 minutes washing her hands or getting the hand gel.  
The girls are attending school a few times a week, starting to attend birthday parties and activities where not all the kids have clean noses.  I'm adjust my "coughing sneezing runny nose scanning sonar ears" but it's a new habit I'm learning...trying not to be so paranoid.  
We have a new addition to the family....the hamster.  I had this crazy idea that a hamster would be less work than a fish tank...ahhahhaahhaaa!!!  Who's idea was that?  Ok, it was mine.  Gabriella and Bridget were so excited at the thought of having a hamster (and I needed a reason to get rid of the fish tank) so we looked into it.  We talked a lot about responsibility of having a pet and after school last week, we drove over to the pet store, got the supplies and got our hamster.  I have to say, she's a darn cute little thing.  Stinky but cute and G just loves her to pieces.  I'm amazed at how well G does with animals.  She's so loving and careful and "Peaches" has really taken a liking to G.  She's already gotten out of her cage twice in the 2 1/2 days we've owned her but she was found and put back.  Bridgy really wants to hold Peaches but as soon as G puts her into B's hands, Bridgy hands her back.  

Making Cakes

I've had to take a short break from all the foundation activities to try and throw myself back into cake artistry.  It's been a difficult adjustment mostly because my objectives and life's work is in a very different place than it was a year ago.   I still love doing it but I realize after the intense past year we have that I'm just not as passionate as I once was.  This just shows me how much this past year has changed us.  Once I finish the projects this month, it will definitely need to take a back seat to what is now my mission...childhood cancer.  

Our Meeting

Last Thursday we had an important meeting at Packard with our oncologists, a director of radiology, the chief of radiology and another administrative director.  Without going into all the details, I'd have to say it was a successful meeting.  We've encountered some less than welcoming experiences at Packard this past year.  I asked at one point if maybe it was just our bad luck.  But after taking with other families that have been treated at Packard, we realized that there are some obvious glitches in the system.  I see it as a working relationship, similar to a personal relationship.  The grass looks greener on the other side and it is.  But it too needs watering, mowing, and attention.  We will encounter problems everywhere we go.  I've seen it and I've been on the other side of those problems working at many different hospitals.  Most of my young life was spent adjusting to different schools and different places.  As an adult, I'm tired of leaving one place to find different problems at another and I swore I wasn't going to do this to my children.  Maybe that will backfire on me later or maybe not.  But, if these people at Packard are willing to sit down for over an hour with us, listen to our experiences this past year, look into solutions together and are so passionate about caring for my child that tears are shed by the thought of her leaving, I'm willing to see if the system can change (of course to a certain degree).  At one point, we were asked if we would tell our story to the Chief Operating Officer.  I will tell the story over and over and over again until it is better.  But they better be damned sure about following up after this meeting...or else it was all a bunch of hot air. 

"When you are faced with extraordinary situations, do extraordinary things. "

We weren't put in this situation so we could crawl up in a little ball at the end or pretend it didn't happen to us.  We were given this situation for a reason.  Trust me, I hate it when people say this to me but I realize how true it is.  The amount of growing and changing I've done personally through this past year is something I don't ever want to forget.  I don't want to pretend didn't happen.  I'm just lucky enough to hold my daughter at the end of all of it and say, "Baby, you did it.  You beat cancer."  Great things can come if you make them happen.  

My Bridgy...always making everyone laugh.

This little one cracks me up!
"ME" fairy coming soon!

My final thought.....
When life gives you lemons, make lemonade....and Just Keep Swimming.

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.