5fer Gordie, writes about this grant cycle's honoree...

Molly is our miracle girl, and her story will amaze and inspire you. 

As you can see from the print ad (which ran in many airports throughout the country as well as in Vanity Fair and New York Magazine for almost a decade), Molly Nye has faced more than her share of challenges.  Her courage and tenacity in meeting them inspires us every day.

When Molly was two, she was diagnosed with Clear Cell Sarcoma of the kidney (“CCSK”) during a well-baby checkup.  Twelve hours later, she was rushed into surgery (the removal of the tumor and her left kidney).  She then began a six-month regimen of radiation and chemotherapy.  CCSK is a rare form of cancer, and chances of survival are not statistically powered.  “It’s her against her cancer,” we were told.  She returned to health, school, friends, and her new sister with abandon, and we became increasingly relaxed as she stayed cancer-free for three years.

Then, again without warning, she relapsed.  This time, despite scans every quarter, she developed a metastatic tumor in her brain.  Emergency surgery, focal radiation, and chemotherapy all were warm-ups for an extremely aggressive, experimental approach – an autologous bone marrow transplant (i.e., high dose chemo). We camped out at Children’s Hospital Los Angeles for many, many weeks as Molly suffered through horrifying side effects and many scary moments. 

She joined her new Kindergarten class in December, completely bald, carrying a “throw-up bucket” under her arm each day to school.  She was fed 100% by IV until mid-February.  She was the youngest kid in her class, and, what is typical of Molly, became one of the most popular kids in the class in very short order.  

In the spring of her 6th Grade year, after her admission into the Archer School for Girls in Los Angeles for the fall of 2007, Molly’s routine MRI showed that she had a new brain tumor.  Eight years had passed since her last bout with CCSK.  This new tumor, however, was NOT CCSK but a primary brain tumor.  It was biopsied and found to be a GBM (glio blastoma multiforme), a brain tumor with poor prognosis.  

UCLA’s hypothesis was that Molly’s new tumor was caused by the radiation she received to treat her prior tumor and that, perhaps, its formation was accelerated by growth hormone therapy she received to return her to a normal growth curve.  She is unusually young to get a GBM (this is one major reason why we don’t pay too much attention to the grim statistics: they nearly all apply to male victims in their late 50’s).

Molly underwent two brain surgeries, an experimental vaccine infusion (the vaccine was made up of her tumor’s dendritic cells manipulated in vitro to teach other similar cells to kill themselves), radiation, and more chemotherapy.  

Her brain surgeries left Molly with left-side weakness, which initially put her in a wheelchair.  She fought through that with a vengeance: she got out of the hospital for good in late August 2007 and began occupational and physical therapy multiple times per week.  She began Archer partially paralyzed, frail (needing naps each afternoon), and on chemo.  By the Winter Term, she was playing Middle School Basketball!

Molly has remained clear of any recurrence for nearly 5 years.  Her rehabilitation (physical) is largely left to her: she exercises her left hand, she plays piano, she swims, she plays tennis, she does yoga, she works out.  She meets with a psychologist to work through her growing awareness of what her disease and treatment side effects might mean to her future.  As a junior at George School (a boarding school in Newtown, PA), Molly is just beginning to explore what her college choices might look like.  She is our miracle girl, and we are proud to honor her with our 5 for Fairness Grant!

Our family re-staged the original shoot of the Make-A-Wish ad this past August.  We happened to be in Palo Alto, CA (the site of the original ad shoot) and drove by the location.  We piled out of the car and attempted to recreate the shoot (adding our third daughter Poppy).  Pretty great moment…

Views: 525

Reply to This

Replies to This Discussion

Thanks for sharing that, Gordie. Incredibly moving. Molly is

one resilient young woman. 

Reading the whole story again...it is so amazing and incredible what she and you have been through.  Love all of you Nyes and am so happy that $5foF is honoring Molly!

Wow, this is truly inspirational. I met Molly when she was a coxswain at MAC, and though I unfortunately never got to know her very well, as we were on different teams, she has left a lasting influence on me. Molly, your strength is truly moving,and I'm glad you're doing well and that we can honor you with this grant cycle!

An amazing story !!!  Hard to even find words right now!    Such courage!  Certainly a very inspiring story on all kinds of levels.  Thanks for sharing!

I'm so glad I took the time to read your story about Molly.  We wish her well as she starts her college search and her adult life. Molly sounds like an amazing young woman with great perseverance, very much like my daughter Lindsay, the founder of Breaking Ground.  Lindsay, now 29, has alway been a determined young woman.  When she was three and her very strong will was driving me crazy, a friend told me that her strong will would serve her well in her life.  Nothing could have been more true.  We so appreciate your grant and the opportunity it may offer the participants in our programs.  I'm a bit uncomfortable competing against other non-profits because I know that they are all as passionate about their projects as the supporters of Breaking Ground.  We wish you and Molly the best!  Carla Clarke 

Carla I so understand when you say "I'm a bit uncomfortable competing against other non-profits because I know that they are all as passionate about their projects as the supporters of Breaking Ground."   Thank you for bringing that up.

They are!  And we are all so lucky that the world is inhabited by such brave and indomitable people (just like our honoree!) working so hard for fairness.

Here's how I have reconciled being a "bit uncomfortable" with the competitive aspect of 5 for Fairness. 

First, nonprofits are competing all the time. They are competing for grants, for supporters, for donations, for attention, for Likes on facebook and followers on Twitter.  

The way I see it, when a nonprofit goes after a grant in the traditional way, they work really hard on the proposal, writing and rewriting, fretting over the wording, answering questions that they've never seen on any other grant proposals and then...maybe they get the grant, maybe they don't.

Either way, only a handful of people will have heard their story and evaluated (with little if any give and take) their proposal.  Also, there is not much they can do after the proposal is sent in to influence the outcome. They hit the "send" button or put it in the mail, and it's done.  

But if they throw their hat in our circle and try to win our grant, literally hundreds of people will hear and evaluate their story. Each of those people is a potential supporter, a Liker on their facebook page, a follower of their Twitter feed. Each of those people is also a possible donor.  We know for a fact that - especially after close contests here - the second place finisher often gets donations from people who heard about them through 5 for Fairness.  

Which brings me to another idea that makes me more comfortable with the competition.  When a Team reaches out - as we have seen all these Teams do - to their supporters to ask for help wrangling votes, they are giving their supporters something positive to do for them.  And in the process of sending out a few emails that say something like, "You've got to donate five bucks and vote for this amazing organization I know about", those supporters graduate to being advocates.  And that can bring about a deepening of the relationship between Team and advocates, a mutually supportive process that continues long after the grant cycle is over.

In the process of trying to win our grant, our Team leaders will write and refine text that they can use over again on their website, facebook page, Twitter feed and yes, old school grant proposals.  And when they are asked a question by a member of 5 for Fairness, they can be sure other potential supporters will have that same question.  

The competition also does something truly crucial for 5 for Fairness.  We only ask our donors for $5 (though many very generously donate more).  At $5 a pop, it can take a looooong time to reach $5000.  The tougher the competition, the more $5 donations we take in, the sooner we can give away another $5000 to a great Team making the world fair for girls.  Our main mission is to help keep dollars flowing to worthy organizations doing great work on behalf of girls and women.  If the competition helps that happen, I guess I'm OK with that!

Would love to hear your thoughts...

Had to add this...despite the intense competition, it feels to me that the Leaders of our Teams really respect and honor each other's passion and work.  I have seen the Teams communicating on Twitter after the grant cycles are over. Here's a Tweet by Solar Sister, which won our last grant by a mere four votes over Team VOICE: 

Carla,

I know what you mean. Every time I ask people to vote, I remind them that their $5 will go to another equally deserving organization if Breaking Ground doesn't win.

I just loved reading this Alex because it is so true and one of the things that makes 5 for Fairness so special - I know, I'm biased! - but the fact that the competing Teams are ALL doing good work that needs funding is what drives us.  And the more competition in any given round, the faster we get to our next $5000 to give away. 

And when I think about all the people out there on the internet, shaking the trees to find votes for their Teams - well, each one of them is now an active participant in this long struggle we are all in for fairness. Makes my day.

Molly's story made me think (not for the first time) "I don't have ANY problems." What a gutsy girl. She must have an amazing family as well. Good luck to her and to them all.

RSS

BUYING FROM AMAZON?

5 for Fairness

Members

© 2014   Created by 5 for Fairness.

Badges  |  Report an Issue  |  Terms of Service