Team G Foundation

Dear Team G Supporters and Childhood Cancer Advocates,

This past year you have been a part of "Team G"; 5 year old Gabriella Cosner's fight against cancer.  Through the year, you gave support, encouragement, and inspiration to our family in some way.  Adam and I were so humbled by the goodness of family, friends and strangers willing to support us during an incredibly difficult time.  We saw the outpour of love and support for children fighting cancer and vowed to keep it going for other parents and children facing the same situation.

Through our journey, we started meeting more families and their children who were stricken with cancer including a local teenager named Tianna who was fighting the same cancer as Gabriella.  We learned that the National Cancer Institute dedicates less than 4% to all 12 types of childhood cancer, we knew more needed to be done.  We also learned that there were many life saving projects just sitting on the shelves and trials that couldn't take place because of lack of funding which pushed our motivation even further. Ideas started generating from making a difference with families on a personal level to researching on a national level.  These continued on a path of meetings, paperwork, internet searches, website building, finding board members, talking to lawyers, fundraisers, more internet searches, etc. and everything started to come together to turn Team G into Team G Foundation.  Our mission came to realization. The first part is to provide "starter packages" with the help of oncology social workers to newly diagnosed families at pediatric hospitals across the nation.  The second part was to raise funds for clinical trials for pediatric cancer research.  With the help of pediatric oncologists from the Children's Oncology Group, which provides treatment plans for more than 90% of children battling cancer, we will begin to fund research appropriately. 

Team G Foundation is about all children fighting cancer and a community of nationwide support behind them.  We have officially launched Team G Foundation; a childhood cancer foundation which will raise funds for researching new and less toxic treatments and support families fighting pediatric cancer. Together we will fight this insidious disease until no other parent hears the words...."your child has cancer".  We will do whatever it takes to  fund further cancer studies in children, find research studies for progressions in treatment, and ultimately find a cure.  Until then, we will support families fighting their child's cancer with the resources on our website, with stories of children that have inspired us and with our "starter packages" for families newly diagnosed with pediatric cancer. We are in the process of obtaining our 501(c)3 nonprofit status, which we expect to be completed in a few months. 

"FIGHT FOR GOLD"

With my husband and I being fit and athletic as well as our board members either being CrossFit trainers, marathon runners, cyclists or just all around darn good athletes, it made sense to have a workout regimen as the main component of our fundraising.  We created the "Fight for Gold" challenge where individuals register their workout (100% of the proceeds are used directly for funding research and family support), obtain sponsors, and perform a 7 minute workout on the 7th of every month in honor of the 7 children who die of pediatric cancer every day.  You can read about it here: http://teamgfoundation.org/fight-for-gold-challenge/.  It's easy, it's fun and it's a win-win for everyone!

"FAMILY FESTIVAL FUNDRAISER"

Please save the date of July 7th, 2013 for Team G's "Family Festival Fundraiser" where we can introduce our foundation and our mission.  The Festival will be held at Redwood Estates Pavilion at the following location from 12pm to 6pm.

21450 Madrone Dr. Los Gatos, Ca 95066

We will have live entertainment, food, drinks, bouncy houses, pony rides, face painting, and a fun atmosphere for families and kids to enjoy an afternoon of fun and learn about Team G Foundation.  We will also have a silent auction for everyone to bid on some great items!  

If you would like to be a part of helping plan this event, please send an email toTGteamgfoundation@gmail.com or krisycos1@gmail.com.  We will happily take donations and help to plan an amazing fundraiser where we can start raising funds toward our mission!  There will be more information to follow as well as many more fundraisers ahead including our CrossFit Obstacle Course, our Bake Sale for Cookies for Kids' Cancer, Adopt a Family with Jacob's Heart, and more.  

"BORDER TO BORDER FOR CHILDHOOD CANCER!!!"

Please be on the lookout for our very own Bill Sylvester who plans to ride from the border of Canada to the border of Mexico in the month of September in honor of Childhood Cancer Awareness Month and to raise funds for Team G Foundation!!!  We are ecstatic about Bill's ride and will be setting up a donation page, flyers, establish a route and much more to support Bill in his journey.  

We can't do this alone....so please help us make a difference in the lives of these children by helping fund childhood cancer research.... and their parents who begin their journey with pediatric cancer.

Please visit our website at www.teamgfoundation.org and "Like" us on Facebook at www.facebook.com/teamgfoundation.  The more likes, the more awareness, the more we can do for childhood cancer.  

From all of us on the Team G Foundation Board, we thank you!

A Good Post ;-)

Well, the last couple of days I've been thinking about this great post I was going to write since last week was a little difficult.  Then, tragedy struck...in Boston.  Damn.  This one shook me up pretty good especially since the Big Sur is coming up in a couple of weeks.  A bombing at a marathon?  Really?  The thing that struck me most is because the end of a marathon is a cause for celebration, the completion of a grueling challenge, the sweet smell and sight of the finish line....especially at the Boston marathon.  People train their asses off to qualify and run this race...literally.  Now, the sanctity of this race is poisoned.  We've seen it happen again and again at elementary schools and high schools all over the nation.  For the last year, I haven't been able to follow these school shootings or process the aftermath of these devastating acts.  It was just too difficult.  This one, I took it in. There are no words for these senseless acts of pure terror.

I've found a couple of quotes that will stick with me in these tragic times:

"When I was a boy and would see scary things in the news, my mother would say to me, 'Look for the helpers.  You will always find people who are helping'."- Mister Rogers

"You must not loose faith in humanity.  Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty." -Gandi

Back to our lives....

Besides an up and down last week with emotions, this and that, we are all doing great!  I got my long run in (yay) and it felt amazing!  Gabriella and Bridget are loving school and loving being on the go.  G is getting some lovely locks and looks amazing.  Bridget is doing her best to keep up but get's pretty tired by the end of the day.  She dropped her naps back when we were staying home a lot just being mellow.  Now, she realizes she needs a nap and will often fall asleep in the car.  She could probably use some "routine naps"but I don't think she will comply.  Plus, we are having too much fun running around during the day.  If she sleeps for more than an hour, she'll be ready to party till 10pm....and that's parents time!

We got to see our Wish Granters, Jan and Gene a couple of days ago to get us all ready for Disney World.  We are all SO EXCITED!!!!!  I started packing up yesterday even though we leave on friday.  I just can't wait!!  It's going to be a fabulous trip and we are all really happy to spend time with each other.  They even have a parent's night where they watch the kids and mom and dad get to go to dinner!!  Whooo hoooo!

I've been hard at work on helping plan Mama's Night Out, which is already sold out to 420 local women.  With the organization and motivation of Cara and Michelle, along with the Jacob's Heart Crew, Susan, Deb and Judy, it is going to be an amazing event.  I can't say this enough that I am so honored and proud to be a part of this amazing community of women.  Team G Foundation is getting rolling as well and I'm really excited about this!  Its taking a lot of time and energy but I am motivated and determined to see it through.

I hope everyone has an amazing rest of the week and we will post more pics from Disney World!!

Kristin

PS.  Thank you for all your encouragement when I was down last week.  I know these things will happen and I'm lucky to have people like you helping me through the rough times.  Even though it lasted only a few days (besides the GI and vertigo issues..blah) I wanted to share it with you all especially for those who have been through the experience or those who will experience it.  It's ok and you're not alone.  Much love to all of you!

Is this what PTSD feels like?

It's been a roller coaster of an emotion this last couple of days/weeks and I'm feeling the "post treatment" anxiety and stress that I've heard other cancer parents talk about.  Where every pain, or every soreness, or anything that isn't totally right means everything is totally wrong and the cancer has come back.  I'm finding myself wanting to be distant from friends who I'm not really sure have gotten the trauma that we've been through this past year.  I think I'm just having some anxiety from G being out of treatment and wondering if this monster is going to come back.  The fear... the fear of relapse is there....it's so real and it's present.  There's nothing I can do to make that fear go away and it makes me feel out of control.  I find myself needing much reassurance for being a good parent, being a good mom... so I go to those who have been there; my cancer parent friends and I ask them, "why am I feeling so terrible, about everything....when I should be feeling so great? And back and forth.  The wounds are still there, still very fresh and they have not healed.  The pictures and the feelings are still so fresh in my memory....leaving her in the MRI department after inducing with sedation, leaving her in the PET scanners...sedated, leaving her in the OR...sedated.  My little peanut...I had to leave her so many times.   I got a whiff of something that reminded me of the toxic smell Gabriella used to emit after her long chemo's.  God, I hate that smell.  I'll never forget that smell and it will bring me back to those times in the hospital having those poisons running through my little girl's IV lines.  (And now tears are pouring down my face).  I don't know how a parent lets this happen to their child and doesn't suffer the consequences.  I don't think there are any.  We are the ones that hold our children down, sign the papers for their bodies to be cut, burned and poisoned.  Our precious little babes we held in our arms and fell in love with the day we met....equivalent to the brightest part of our life to the darkest of moments having to walk away from our child while strangers "fixed" them.  And after all of that....there are NO guarantees.  None.

I met a friend the other day.  She said so casually, that I was doing the right thing.  We've been through a ton this past year and I was feeling like a guilty run down mom who couldn't do everything I needed to do for my children...but that it was ok.  That's all I needed.  All I needed to hear.

I know its temporary and the feelings will pass.  It's just part of the ride.

Memories and Milestones

Last month Kris and I were driving home from the hospital after G's last chemo treatment.  I looked at Kris and said what we both were thinking.  "This may be the best day of our lives".  We both chuckled a little but understood that this was a battle won, but the war was and is yet to be determined.  The next incredible day was two weeks ago when we sat down with Dr. Marina and she told us the preliminary scans were clear, "nothing in her lungs and nothing new on the MRI."  Another brick was removed from our shoulders.  That night at home when the phone rang I gave a nervous glance around before I answered it.  Once again, Dr. Marina with good news, the PET scan showed no cancer activity.  We popped the cork on the Champagne and cried.  Another brick.

The following Tuesday we met with Dr. Marina for a more formal review of the scans that had now been looked at by the oncology team and given their report.  Same results, clear.  Another brick.  We were now clear to have G's port (central line) removed.  Monday morning Kris and I got up and were out the door a little after 6:00am (that's pretty early for us).  We wrapped G in a blanket and tossed her in the car.  As I carried her out of the house, the rain was falling on her head and she covered up with the blanket.  It was the same pink blanket that one of my co-workers, Gina, gave her just days after her diagnosis.  That blanket has been with her through quite a bit.  G slept in the back of the car as we drove to the hospital for one last milestone.  Once her port is out, she is considered a regular kid.  No longer will fever be immediately assumed as a central line infection and require immediate admission to the hospital with a bombardment of antibiotics for weeks.  All three of us were beside ourselves with happy anticipation.

At Packard the procedure was fast and uncomplicated.  The anesthesiologist was cool as was the surgery team.  We got to see a lot of nurses in the recovery unit that we got very close to while G was undergoing radiation.  It was pretty amazing.  The surgeon made me laugh when he came out and told us that we have to keep her mellow for about a week.  Low activity.  This kid has felt like crap for the last year.  She finally feels good and is the most energetic and happy kid I know.  There is no way we could keep her mellow for a week, even if we wanted to.
Last night I was checking on the girls before I went to bed and watched G sleeping in her bed.  It brought back memories of the countless times we had snuck in and given her her shot while she slept.  Damn I'm glad that's over.
The plan now is scans every three months for the rest of this year.  If it does come back, the earlier we catch it the better.  After the first year she moves to scans every four months for two more years.  Then it is scans every 6 months for I don't remember how long, but it will be awhile.
This month has been a series of beautiful milestones.  Great big victories.  We are overjoyed with the news but we realize that we have lots of nervous days ahead.  Parent's in the kid's cancer community called it Scan-xiety.
We have had a few questions about when will it truly be over, when can we really celebrate?  If there is one thing that this year has taught us, it is that we celebrate today, we celebrate every day.  Life is a gift, and right now it is a dream.  We have no idea what is next but I can tell you today, life is good.

Team G

Adam

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!

GREAT RESULTS....CLEAR SCANS!!

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!

BOARDWALK CELEBRATION!

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.

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.