Still Learning From My Daughter

Yesterday marked three months since Naya passed and I'm still learning how to process my emotions. I want to focus on the way she took everyday as it unfolded and made the most of every moment even though many of those movements she felt like crap. She would make plans to ride PJ, or which classes she was going to attend, or make plans to craft with friends and not for a moment think, "maybe I won't feel strong enough to do that so maybe I shouldn't plan." It's still raw and even though I want to focus on the strength she showed me how to pull from I still have those moments where it's hard not to get angry, mad as hell in fact, and frustrated with the odds that she was dealt. My own weakness try's to get the better of me. Then I think about how she never let those feelings in, instead, pushed and fought and worked hard to enjoy life. So how can I do anything but that?

She will always continue to amaze me! So now Sam, the puppy she convinced us to add to our household, is getting big, livin large, and taking over the role of leader of the pack. Take a look. Already housebroken and smart as a whip at 4 months old I'm sure she would approve. Just like Sam, I'll keep learning. I just hope I'm as good of a teacher to him as Naya was, is, to me.

Staying Centered | Naya's Foundation | Precision Medicine Initiative

January was a crazy month. I love work and what I do, as well as the people I get to work with everyday. Add strategic and time sensitive projects, and the workaholic side of me emerges and I get easily consumed. Only this time, working alone wasn't enough to fulfill me. I greatly missed that space I've created over the past several months to be with my family and Naya's memory. I didn't have the mental capacity to be in the moment with the people and thoughts that matter most to me. I veered off course...just for a little while. With the help of my brother, caring friends, Hank and Zak, I quickly figured out why I was feeling off center. I was missing that space, and petty things bother me. That space keeps me grounded and focused on the bigger picture.

I've profoundly changed over the past two+ years, and being grounded in who I am and on what matters most to me is my quest. Draining my energy worrying about what others do, petty drama, or things I can't change is exhausting. I need that energy for what I want to do for me, my family, people I care about, and most of all, Naya. This blog is part of that quest.

This week will be 3 months since Naya passed. I miss her more every day. I believe she's with me every minute of the day. I'm proud to say that I am more grounded in what she stood for and am making progress.

There's progress on our goal to cure pediatric cancer. Naya's foundation paperwork is getting filed so we can get it up and going very soon. We also received over $25,000 in donations in January from amazing people and organizations. These funds will go be directed towards Medulloblastoma (Naya's disease) sequencing at CHOP. Genetic sequencing enables future targeted therapies and advances in pediatric cancer treatments.

This week, President Obama made it a priority to fund the Precision Medicine Initiative, calling for new funding to build a national infrastructure that will allow researchers to custom-design more effective therapies based on a patient’s individual genetic profile.

Read about it. It might change your life.

http://www.technologyreview.com/news/534591/us-to-develop-dna-study-of-one-million-people/

"Precision medicine refers to treatments tailored to a person’s genetic profile, an idea already transforming how doctors fight cancer and some rare diseases."

Strong Roots

Someone who I respect and admire asked me about my family and parents as a way to understand more about how I'm getting through losing Naya. It was a surprising question, but one that made me start connecting many dots about my life. Life isn't so random after all. The quick facts about my upbringing. I'm 100% Indian, born here in the U.S., raised in Ohio. When I grew up it wasn't cool to be Indian. Nothing like today, where being different is now cool and embraced. I was different, and so were my parents. They were privileged in India, but came here to start a new life. They worked hard. My dad earned his PH.D. while working as a janitor, professor's assistant and other odd jobs at Michigan State. Mom babysat to make ends meet and learned English through osmosis. They ended up divorcing when I was a teenager which, at the time, was socially unacceptable in Indian culture. They struggled to find happiness for a while, but ended up happy and at peace with two children + four grandchildren to love. Their desire to be happy, love for family, honesty, generosity, and fortitude guided them throughout their lives and paid off.

They taught me a lot. Work hard, be honest, be kind, love people, live life to its fullest and look forward. For many years, it was my dad who raised me with those values. As I got older, I realized my mom had the same values, and in some ways they were stronger in her than my dad. I married Hank, another very determined, talented person with a positive outlook on life and many of the same values I grew up with. Both of our parents persevered through many life challenges. While not the same as losing a daughter, they had their own difficult hurdles to overcome.

When I reflect on my family and Hank's, they always moved forward in spite of obstacles. They lived life as full as they could. My dad used to say "life goes on" when something that he didn't like happened. Simple words, but true. The key for me is how to be now that life has gone on without Naya present. As I type, I realize life is going on with Naya. She's always present with me and always will be next to me.

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New Year's Resolutions

I have come to deeply appreciate how difficult it must have been for Naya to keep smiling and live positively through a very tough fight for her future. In spite of knowing there was a chance she may never fulfill her dreams and her daily physical challenges, she gave us all huge smiles, laughter and constant positive energy. She truly started the day with an attitude to "give it her all" and "enjoy life". She had a purpose and left a legacy because of her attitude. Keeping a truly positive attitude in the face of physical pain and disability, deep loss or daily challenges is REALLY HARD. Let's be honest; it's hard even without challenges. We all fall into habits of complaining even if our lives are pretty good.

Naya's drive pushes me to keep working through my own emotions every day. I remind myself multiple times a day to enjoy everything and take life in. It's not easy, but I think the more I make it a habit, the more it will just happen naturally.

The holiday was challenging, but also full of many joyous times. Our puppy Sam has brought many laughs. I believe Sam was Naya's Christmas gift to us, to help us get through our pain. A second tree now known as "Naya's tree" and a Christmas Eve gathering at my brother's house are new traditions. We deeply missed Naya and my mom, but honored both of them by sharing many laughs and tears together.

We went to California...our first vacation without Naya and my first birthday without her. I took many deep breaths and told myself to go with the flow. I believed special memories and funny stories would come out of the trip. And they did. Watching Zak and Hank laugh, hanging out with happy friends, meeting new ones, witnessing one of my closest friends get married, and spending time with Hank's family were all precious. Moments in life created by a positive attitude and inner strength to push myself.

I'm learning to check my attitude on the most mundane things. I went to the Container Store recently. I thought of that store as an errand. Naya thought of it as an adventure. She couldn't believe there was an entire store dedicated to organizing things. We stayed there for a while because of her excitement.

Daily meals, watching TV, going on errands, shuttling Zak around...these are all opportunities I cherish and have come to appreciate and really enjoy.

Don't get me wrong, we cry and hurt for Naya constantly. That'll never change and I don't want it too. We are forever changed and how we change is what is most important now.

That brings me to resolutions that I've already started. Actively seek the silver lining in everything. Be kind. Be compassionate. Laugh. Give back. Ask and work hard for what I want. Stay healthy. Be positive.

We are establishing The Naya Foundation. It turns out setting up a non-profit takes a little time. In the meantime, if you want to give to Naya's mission, use this NEW link. The old one will go dormant soon.

http://chop.donordrive.com/campaign/TeamNaya

A Sunday reflection

$210,000...that's what we've all donated so far to help cure pediatric brain cancer. I'd like to think that money is already saving children. I hope that thought makes you feel good this holiday season. It helps me. My gut says we'll get there soon, and the cure isn't far off. It's been a long time since I've had time to do much. A couple of weeks off is very welcome. With it comes more time to contemplate our life, Naya and the last two years. Naya's absence becomes more noticed and real every day. I don't really think she's gone, just not her with me. Our lives will always be influenced, directed and energized by her. It's just not clear yet how things will turn out, but it's undeniable that she will continue to shape us and watch us.

The tree is up, and stockings are up too. I put Naya's stocking up and see it every day on the mantle. It's of course pink with horses, which makes me smile. Friends and I also put up all of her favorite ornaments with care, tears and smiles.

I miss her. She would be cheering on the Steelers today with me and looking forward to wrapping presents. There was so much about Christmas she loved, and I loved experiencing with her. One of my favorite and stupid things to do with Naya every holiday is go to Hallmark and buy there fluffy santa/snowman toy with music (see picture). They play music and shake. I am ashamed to admit that I'm one of those people who buys them, and I have a "collection". Today, I saw a funny Snoopy one, and wanted to get it. Zak was so embarrassed and wouldn't let me. Naya would have. Tomorrow, I'm going by myself and getting it. I have to for her (and me).

Today, I tortured Zak and took him shopping for Hank's gifts. I found a great store in our town with the best ornaments and Christmas decor. Truly the best I've ever encountered. I bought a few things while Zak was irritated and waiting in the car. If Naya were here, we would have been in that store all day! I bought a couple of things she would have liked including more ornaments for our already over-decorated tree. I might get a second small tree just to put her things on it.

The puppy, Sam, is quite a handful. He's smart, spunky and loves to play. He's pretty independent too. In the first week, he did a few things that Naya would have laughed at. He pulled her favorite blanket off the blanket rack and the entire rack came crashing down on him. He took a piece of clay sushi off of a sushi art project she made, and he found one of the rocks from her rock collection in the yard and brought it in for us. You could say it's all coincidence, but I like to think it's Naya letting us know she's around & enjoying Sam too.

Another thank you by Smilebox

Ahhhh the Holidays and Naya's gifts

The holidays are such a special time. For us, old traditions have to be changed unwillingly, and new ones are forming. Naya was very involved with choosing and decorating our tree. This year, she isn't here for either. So, I invited a friend to help me with the tree. Changing traditions isn't easy, but it's better than the alternative of yearning for something that can never be. Driving through towns, seeing the lights in NYC and going to malls in the Philly area, I notice so much more about Christmas. It truly is a holiday for children. That may be obvious to you, but for someone who wasn't raised in a traditional American home, it wasn't to me. The Thanksgiving parade, songs, trees, ornaments, lights, traditions and beautiful decorations are magical. No wonder kids love Christmas! I think parents love it because it's so magical to experience Christmas through their children. I miss the Santa wish list, the stories about each ornament going on the tree, Elf on the Shelf (although Zak will play along this year and humor me) and so much more. We will find new things and traditions that include Naya even without her physical presence.

Naya left us a couple of gifts this Christmas...

Her 6th grade classmates at Agnes Irwin had the idea to do a service project in Naya's honor. The girls collected 325 new books to donate to CHOP's Oncology floor. Thank you AIS. Naya would have been so proud of her beloved school and friends!

In the summer, Naya begged for a new puppy, and with Zak's added pressure, we decided to get one. She knew he was on his way and would be here in December. She named him Sam, and saw a picture of him soon after he was born. I'll never forget her smile when she saw that picture. We picked him up last night. I can hear her laughing as he runs around discovering the house, chews toes and plays with Gabby & Duke.

On other fronts, we're working on several things to honor her memory and mission including establishing her foundation that will focus on her life's missions:  curing pediatric cancer, marine biology and supporting AIS. My hope is to launch in January, and start to gather your help as we carry on her mission.

Enjoy your holiday & spread the magic of the season. Laugh, smile & love.

Living in Full Color

Life without Naya. I had hoped I never had to face that reality. But here it is. What's it like? Quiet, empty, sad, and painful at times. As if there's too much space in the air and it needs her laughter, wit, opinion, and presence. It's not always that way. Pictures and daily experiences remind us of her happy life, laughter, strength, kindness, courage and loving nature. Our home and community are filled with her presence and surround us with her style, personality, grace and smile. And, there are the life-long gifts she left with us to carry forward.

The most generous gift of all is how she has helped me open my heart to others. I feel like a Kay Jewelers ad, but it's true. I have met so many people who are so compassionate and have opened up their hearts, love and friendship to our family and me. Our story and mine have touched many at her school and in our community, and I look forward to continuing her legacy and her story with many of you. I am establishing new friendships and growing old ones all thanks to Naya. I care about their lives as much as they care about ours, and would be at their side any time.

I'm also finally understanding that caring for myself is just as important as caring for others. How many of us, especially women, have heard that before. But taking care of ourselves allows us to live life in full color. Naya showed me daily that she wanted to live in full, regardless of the obstacles in her path. We're given one life on this earth. What's the point of not living large, experiencing everything, and taking some risks? What's the point of not being your best in all you do? What's the point of not experiencing joy, laughter and love? But, you can only do those things if you truly take care of yourself.

Finally, life is not full without being grateful, thanking people and giving back. Roughly 500 people gave up their Sunday afternoon to celebrate Naya. At least 800 people gave over $200,000 to her cause. When we began this journey, we had no idea it would touch so many people and change their lives too. Many of you were grateful to us for sharing our journey, life and Naya with you. Well...Thank you!!! You have helped us get through the most difficult time of our lives. You cried with us, celebrated with us, loved us, and now are supporting her dream of curing cancer. What more can we ask....Stay with us and follow our journey, follow the blog. As she said on November 5th...I've only just begun.

Her celebration was incredibly special. Here are some beautiful pictures, and one from last Thanksgiving. The service was held at her barn with PaintJack present. Her celebration was all Naya. Perfect colors (purple and pink), her favorite foods (sushi, chocolate ice cream and brie), and most importantly, a room full of hundreds of people sharing their love of Naya in full color. She was watching all of us with a big smile.

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

Naya Galyn Summy

I've only just begun!

Naya Galyn Summy 5/27/2003 - 11/05/2014

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.

Being!

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!

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.

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!

Updates - Naya, TeamNaya and Run Details

Naya's had a roller coaster 10 day span. She is struggling to keep healthy sodium levels in her system, so she's good for a couple of days, then ends up in the hospital. Last week, she went to a photography class, school, and the PICU to get fluids for very low sodium. She bounced back a day later and had a good weekend, but was admitted yesterday for the same issue. This time, her doctors want to monitor her and figure out a better plan so that we can manage her sodium from home. Needless to say this is tough on all of us, but especially Naya. This issue is caused by her disease and happens to people with brain tumors or brain injuries. Unfortunately, we haven't been able to manage it well due to her extreme fluctuations. All the more reason to support the cause and find a cure. TeamNaya has raised over $105,000!  So far, 140 people are planning to come, and we expect more the day of the race. Naya is by far the largest fundraiser and has set an example of what can be done if you set a big goal. All of the funds are being directed to the Neuro Oncology research fund with a specific focus on brain cancer research. This is a big donation to give to that team, and they are very appreciative. Thank you for your amazing support!

I would like to call out many people who have supported us from our circle of friends and the community. Over 400 people have donated this year, including many people we have not met but have heard Naya's story. Our friends from TE Connectivity, Sapient (current and alum), McCann/MRM, SR Research, Benari Jewelers, PerLei, Alliquippa Stables, The Haverford School, Agnes Irwin, Media, Newtown Square, Lancaster, Ohio, Denver, SanFrancisco, Boston, Florida and beyond have been with us all the way. And, finally, our families who love Naya and us and would do anything to support us.

For those of you coming to the race, we will have tshirts for everyone, and will be selling TeamNaya DriFit t-shirts and ponies.  DriFit shirts will be $25, and the ponies are $20. All proceeds will go to CHOP.

Below are game day details. We are hoping to get some group pictures too, so if you can stay a few minutes past the race time, please do.

Date: Sunday, September 28, 2014 (rain or shine)

Location:

Four Seasons Hotel Philadelphia One Logan Square 18th Street & Ben Franklin Parkway

Meet at the Team Naya tent

Schedule:

• 7:00 a.m.- Registration Opens. Event Day fees: Adults $35 & Kids $15 (12 & Under)
• 7:30 a.m. - 8:15 a.m. - Pick up your t-shirts and running badges at the TeamNaya tent. If possible, we'll take a picture around 8:15.
• 8:30 a.m.- The 5K Run Starts. The 2K walk will begin after the start of the 5K run.
• 9:45 a.m. - Awards ceremony
• 10:10 a.m. - AIS and Haverford school picture (meet at Team Naya tent)

There will be breakfast served after the race courtesy of The Four Seasons.

Hillary & Naya Sighting

What do they have in common?  They make an impact, have many supporters, and inspire many people. They have both created such brand recognition that you don't need to say their last name! There is one big difference that sets them apart - Naya's the one who declared her desire to win and achieved her goal.  As of today, she has raised over $100,000 for the upcoming Four Seasons Parkway Run/Walk.  All of your donations are going directly to her world-class Neuro-Oncology team of doctors and will be used to fund pediatric brain cancer research.

If I were voting for President, I know who I'd pick!  How about you?

Today's the last day for online sign ups, so if you haven't done so, now's the time.  Donations are still being accepted online.  If you want to register and missed the deadline, you can register at the event. To donate to TeamNAYA, go to http://chop.donordrive.com/team/teamnaya

Stay tuned for updates this week regarding logistics and times for the Run.

They Are All Heroes

If you live in the Philadelphia area, you will see Naya's face everywhere. From our SEPTA bus system, to CHOP and highway billboards, she's everywhere. With the wonder of web re-targeting, I have seen her on WSJ.com and Yelp. It's a little odd to be reading the WSJ online and see your daughter's mug follow you. I'm being stalked by my beautiful 11-year old. She's raised $93,000+ so far, so we're hopeful that the $100,000 goal will be reached this year thanks to all of you! The money we're raising can fund a trial or two researchers for a year. Think of what that could do! If you haven't yet signed up or donated, but want to, now is the time. Here's the link http://chop.donordrive.com/team/teamnaya.

I wanted to share something I heard today because it's so important to share. I had a conversation with some mothers who are going through a similar situation. One told me that after her son's first year battling his disease, donations were harder to come by. I kept thinking what he must think about that, and it made me sad. They all told me that they were inspired by our efforts and thought Naya was a hero who had motivated them to do more. I just wanted her son to see the same support we're experiencing because he's also an amazing person and a hero.

Cancer is a long-term illness, so please keep your support and interest levels in our story high. Even if you're just following the blog or sending a comment, everything makes a difference and raises awareness. The treatments that kids go through are unbelievably harsh. They need to know we're going to help them no matter how long they are fighting. There's a lot more going on in September for Childhood Cancer Awareness Month. If you want to get involved, I wanted to pass on an idea that is spreading in our area.  A parent came up the idea to do a lemon juice shot challenge (similar to the ALS challenge) to raise funds for pediatric cancer research. Naya participated in the challenge with many CHOP nurses, and you can see her reaction in the picture :)

Many of you have asked about Naya. She's been going to school for a few hours several days per week as she continues her treatment. And, on occasion, she dresses up and we go to her favorite restaurant and hang out with Uncle Tushar. She is riding PaintJack when she's up to it, and looks great on him! Today, she went to the first of five photography classes donated by the Pablove foundation, another great foundation helping kids battling through pediatric cancer. Overall, she's doing well and has a great attitude.

Thanks for asking, and keeping us in your thoughts and prayers. We are looking forward to seeing many of you in a couple of weeks.

Less than 4% of cancer research goes to help kids...let's make a difference!

We are closing in on goal to raise $100,000 to fund pediatric brain cancer research.  In recognition of Childhood Cancer Awareness Month, and with $16,000 to go, it felt like the right time to tell you why this is important....

1 in 285 children will be diagnosed with cancer before age 20.  About 80% survive past 5 years.  And about 20% will lose 71 years of life's experiences.

Less than 4% of research funding goes towards for pediatric cancers.

About 43 children per day or 15,780 children total are expected to be diagnosed with cancer in the U.S. in 2014.  

In 2010 there were 379,112 childhood cancer survivors in the United States.

In an average school, 3 kids are in treatment or survivors of cancer.

Give to TeamNaya and help kids live the livest they are meant to live.

To donate to TeamNAYA, go to http://chop.donordrive.com/team/teamnaya

Seriously Cute Paint Ponies for Adoption to Support TeamNaya

 

You all know about PaintJack, Naya’s horse.  PaintJack’s real name is Jack, but since there were multiple Jack’s in the barn, his breed, a Paint, was added to his name.  Now, we lovingly call him PJ and PaintJack.

 

TJ, PaintJack’s former owner and our friend, has been concocting ideas to raise money.  She and Naya’s Alliquippa Farms family generously bought 100 PaintJack stuffed ponies for the Walk.  A herd of Paint Ponies are available for adoption with all proceeds donated to Pediatric Cancer Research at the Children’s Hospital of Philadelphia.

 

Team Alliquippa, in support of Naya and TeamNaya, hope to find homes for 100 Paint Ponies so that they can reach their fundraising goal of $2,000. This money will be put towards Naya’s goal of $100,000 for the 2014 Parkway Run & Walk on September 28th.  The ponies are selling at $20 per pony.  If you are interested in these adorable ponies, you can order by clicking this link.

 

http://www.alliquippastables.com/Paint-Pony-Order-Form.html

Back to School!

Naya heading back to school, taking her meds, making sure she is hydrated and of course a gorgeous, generous smile!  She wouldn't let us take a picture of her outside the car at school.  That wouldn't be cool at all after all, so we had to snap this one on the drive.  In addition to focusing on learning, having fun, socializing, she also has to stay on top of her hydration and nutrition or else she will slip behind and it will be hard for her to catch up.  So on top of all the normal aspects of the first day of school, of course, she has a few more details to keep in order.  Go and Fight Like a Girl!