Celebrating Naya

Naya Galyn Summy was born 5/27/03 and left our world 11/5/2014 at the age of 11. She loved her family, dogs, horse and friends. She was a proud student and 6th grader at The Agnes Irwin School. Naya left this world very peacefully surrounded by her brother Zak, Dad, Mom and her dogs. She was widely loved and inspired many with her strength, smile, kindness and courage.
Naya’s legacy will be felt as we carry out her wishes to cure pediatric cancer. In lieu of flowers or gifts, we are encouraging donations to The Children’s Hospital of Philadelphia using this link http://chop.donordrive.com/team/teamnaya.  All funds raised will be directed towards pediatric brain cancer research in Naya’s honor.

We hope you’ll join us as we celebrate Naya.  If you wish to come, the details are below:

  • Guests: Friends, family, followers, and people inspired by Naya
  • Date: Sunday November 16, 2014
  • Time: 1p.m – 4 p.m.
  • Place: Radnor Hunt, 826 Providence Rd, Malvern, PA 19355
  • Dress: Casual. Western, equestrian, pink or purple clothing encouraged
  • What to Bring: Great stories and memories of Naya to share
    Beautiful Naya low res

In Naya’s Words

Naya is home, surrounded by what matters to her … Love. Family. Dogs. Home. Friends. We are blessed to have this precious time together and be with our beautiful girl. Whispering in her ear to tell her how much we love her. Reading notes from all of the people that are sending her their love. Telling her stories that remind her of funny moments and her amazing courage. Caring for her with the same love and gentleness we did when she was a newborn. Kissing her beautiful skin. Holding her hand. Caressing her legs to give her comfort. There is nothing we won’t do for our amazing daughter.

She has given this world so much in such a short amount of time. We all witnessed her incredible positive energy and spirit as she climbed many mountains to see her life dreams fulfilled. We continue to be inspired by her strength, courage, humor, love and beauty even when she is so weak. She has never given up, and never will. But now, we are inspired by what she is going to do.

Naya knew she might not make it through this battle. While she never dwelled in that possibility or felt sorry for herself, she did make her wishes known. She wants to change the world by giving kids their lives back. Her desire is to cure pediatric cancer. When her health was good, even then she wanted all of her leftover college money to go to CHOP and wanted to support their research for the rest of her life. She is inspired by Alex Scott of Alex’s Lemonade Stand, and wishes to make a similar difference for children.

Along this journey, you have seen her words on posters and videos. Smile. Never Quit. Follow Your Dreams. Enjoy Life.Stay Strong. Fight Like a Girl. Enjoy Each Day. I came across a gift she gave Hank for his 50th birthday, before she was diagnosed. In her typical way, she chose something very special that will live with us forever. She chose a small wooden box with a quote:

“It’s not the years in life that count, it’s the life in the years.” – Abraham Lincoln

Thank you Naya for being our daughter. There is no greater honor.

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Everything she does teaches me how to be more than I am!  Even when the odds are against her, she knows the house has the advantage, there appears little to gain, Naya shows me the way.  Fighting Medulloblastoma has been a test of courage, strength, resilience, persistence, focus, and most of all determination.  She has been an icon to me and Amy, showing us at every hurdle how to be!

Over the course of the last twenty one months, the time she has been in treatment, she takes every challenge head on and with grace and eloquence; 2 brain surgeries, 6 weeks of  daily radiation – general anesthesia – and chemo, Six – five week cycles of chemo therapy that every single time put her in the hospital fighting infection for weeks, and 2 – post standard protocol – chemo regiments to fight the effects of her relapsed disease.  Always, thinking of others, mostly Amy, Zak, and me, even though much of the time she battles nausea, aches and pains, and generally low energy, she keeps fighting forward. No matter how difficult the situation is at hand, Naya’s positive drive, focus and attitude inspire everyone around her. To Naya, there is no other way to be.

We are blessed to love her, parent her, teach her, help her through it all, and most of all learn how to be!

Now she faces another challenge.  The most difficult of all.  One that, at 11 years old, I struggle to understand how she possesses the insight to navigate but yet she does.  She is teaching Amy and me how to honor and respect who she is and all that she has achieved even if she may not be able to reinforce the lesson.

The disease is fighting hard to win the battle. Though this insidious villain may prove more than our beautiful, daughter can defeat, she is still showing us how to simply be!  Be strong, be kind, be understanding, be in the moment, be better than we think, be loving, be courageous, be human.  She is beautiful, so beautiful.  Keep being Naya, keep being!

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A Challenging Month Overcome

What a month we experienced in September.  Naya’s sodium issues which began in August seemed to be managed, but things became unmanageable in September. We found ourselves having 2 good days, 1 bad day at the beginning of the month, and constantly getting sodium boosts at the hospital. By mid-September, she ended up in the PICU due to very low sodium, which quickly rectified itself only to reoccur the following week. Finally, she was admitted so we could figure out what was happening, and that led to a 6-day stay in the hospital, with Naya returning the same day of her Parkway Run…although she missed the Run/Walk so that she could get home.

The effects of the sodium roller coaster were scary, causing extreme fatigue for 3 days straight. Thankfully, Naya bounced out of it once we got her sodium stabilized, just in time to see some of our wonderful friends who came in to support her for the Run/Walk. She’s been hanging out at home recovering and bouncing back. We hope to ride PJ today, which would be her first ride in quite a while. And, we expect to restart treatments next week now that she’s stronger.

For now, we’re not pressuring Naya to keep up with school, but she does miss her friends. The AIS girls came out in force at the Run, and recently, they’ve been writing cards to her. The cards are so helpful when Naya’s feeling left out. She reads them and tells stories about each one. Thank you, thank you, thank you to all of her friends and supporters at AIS. She reads every card, text and blog post you send. Hopefully, she’ll be at school soon for a visit/lunch!

All along this journey, I have learned and tried to take things a day at a time. This month, it felt like we were taking things an hour at a time. Being on the other side of the issues for now is a blessing. My advice to any parent is don’t put off spending time with your kids. You never know what’s around the corner. The pictures below show the roller coaster. The picture with the Philly Eagle was on Tuesday in the hospital, the picture with Hank was 1-2 days later, and of course that gorgeous smile and girl  coming back was just yesterday.

My next post will be about the Run/Walk. I’m still collecting photos so if you have one, send it to my personal email at ashah1@me.com. Thanks to everyone for their support. You made a difference for children.

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Race Details

We hope you are looking forward to the Run tomorrow. TeamNaya has raised $111,000 so far, and donations keep coming in. Our family, CHOP and Naya’s team of doctors are so appreciative of your generosity.  Please take pictures and send any you like to me at ashah1@me.com. I hope to put a nice slideshow together for all donors who couldn’t be at the walk but are supporting Naya.

Here are a quick set of reminders:

Date: Sunday, September 28, 2014
Place: Four Seasons Hotel, One Logan Square, Philadelphia, PA

The Team Naya tent will be in the triangle near the stage.  We will be ready to provide shirts, badges, and other items for sale by 7:30 a.m.

For sale:  Dri-Fit shirts ($25), water bottles ($10), bands ($2), ponies ($20).  FYI – Ponies are in limited supply.

Team Naya will be recognized for Top Team:  8:10 a.m.

5K Run/2K Family Walk: 8:30 a.m.
Post Race Buffet: 9:00 a.m.                      Team Photo & AIS Photo: 10:00 a.m./10:10 a.m. – meet at the Tent

Sodium Keeping Us Down

Naya is fighting to keep her sodium levels up and it is proving to be more tricky than just taking salt pills. For months now she has been able to take a couple of salt tablets each day and her levels remained pretty steady at near normal levels. Last week and this week though have introduced a volatility we can’t seam to correct.

This has led to two trips to the hospital, one of them in the PICU. A place we haven’t seen since her initial surgery. Right now she is in the hospital and the doctors are working hard to create a plan and strategy to keep her sodium levels under control.

Naya remains true to herself and even though she feels crappy, tired, and fighting nausea, she is working hard to push forward. She is simply outstanding!



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