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 :)

IMG_1486

Naya with Naya at CHOP

IMG_1485

Naya taking the lemon shot challenge

IMG_1478

Uncle Tushar, Naya, Amy & Zak

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

20130714-110450.jpg

 

 

Seriously Cute Paint Ponies for Adoption to Support TeamNaya

2014FINALFUNDRAISERPONY
 
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.
 

Back to School!

Naya 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!

Parkway Run Video Featuring Naya

As an Ambassador for the Parkway Run/Walk, CHOP took some amazing pictures of Naya. They also shot a video which gives you a glimpse of how Naya has dealt with her diagnosis and treatment.  Naya’s video: https://www.youtube.com/watch?v=bjaICpNXlnE

 ewc_CHOPOncoDay(2)062014000155ewc_CHOPOncoDay(2)062014000195

 

So far, we have raised $53,000 and are well on our way to reaching the $100,000 goal!  With less than 4 weeks left, now is the time to sign up for the event and/or donate.  http://chop.donordrive.com/team/teamnaya

California Dreamin’

Last week, we took a last minute vacation to California. Naya was cleared to travel on Friday and we were on a plane by Sunday. Every day had many highlights. Our excursion started at Pebble Beach. The weather was spectacular. The boys enjoyed golf, while Naya and I explored the Monterey Bay Aquarium, met our friends Patti and Alice for lunch, and went whale watching. The whale watching was amazing, and at times, “epic”.

From Monterey, we drove to San Francisco but stopped along the way for a flat of delicious and sweet california strawberries, fresh-picked that day. Hank and I did the same thing before kids, and the kids got to enjoy the same delicious experience. Yum! Our stay in San Francisco was short but special. A drink with Sheeroy Desai and lunch at the delicious Ferry Plaza Farmer’s Market on the Embarcadero was 18 hours well spent.

On our way up to Sonoma county, we stopped at the Marin Headlands. For Hank and me, it was special to share the experience with Zak and Naya. When we lived in SF, we would go to the Headlands while Zak was young and I was pregnant with Naya. We took pictures at the exact spots we experienced 13 years ago.

Then, off to Sonoma. We stayed in Healdsburg, and like the rest of the trip, the weather was perfect. I took Naya for a short wine tasting trip, then we headed up to our property, which is between Calistoga and Santa Rosa, in Sonoma county. We ate ripe blackberries off the bushes as we rode an ATV around the property. We made many plans of what to build, where to build and where to keep PaintJack while we rode around.

Evenings were spent with our good and long time friends the Odell’s, Marty and Cynthia. Good food, company, weather and wine. It was a blast to be with the Odell kids too. We can’t wait to watch them grow.

Here are just a few of the 200+ pictures we took of our special time.

monterey bay aquarium

monterey bay aquarium

IMG_1344

Naya in Monterey overlooking the Bay

IMG_1347

Zak & Naya overlooking the Pacific ocean near Big Sur

IMG_1362

Naya on the boat getting ready to watch some whales!

IMG_1376

Naya on her picture taking mission while whale watching

IMG_1406

Summy’s at the Ferry Building in San Francisco

IMG_1425

Family at the Marin Headlands

Zak & Naya at the Marin Headlands

Zak & Naya at the Marin Headlands

IMG_1441

Naya smelling the roses in Healdsburg

IMG_1453

Zak and Naya enjoying the scene at the Summy Ranch

A Week Full of Life’s Ups and Downs

Before writing this post, I asked Naya if she was okay giving everyone a peek into the last 7 days, as they haven’t been easy. In her wisdom, she said it was the truth of cancer, that it has its good days and bad ones. I’d rather start with the upbeat part.

Yesterday, Naya rode PaintJack and was back to cantering. She hasn’t cantered since Jan 2013, so it was a big deal. She set the goal with her trainer, Katie, earlier this year. With Katie’s help and Naya’s inner drive, she looked great and had a lot of fun. Check out the video!

It’s hard to imagine, but just days before cantering, we absorbed some tough news. On Thursday, we learned that Naya’s tumor grew a little. This means her tumor isn’t responding to the current treatment regimen. As a result, her doctors are looking for alternatives. There is a trial right now that we’re hoping to get into for her tumor. It’s a Phase I trial and is more advanced than just chemo. So, we’re hoping that she gets a slot. If not, then we’ll look at other therapy alternatives and hopefully another trial comes up. Naya’s confident that something will come along that will keep her tumor at bay, so she took the news well and told me “don’t worry, everything will be okay”.

After coming home from that news, we jumped in the pool and Naya learned the backstroke with about 10 minutes of instruction. Then we celebrated Hank’s bday. Talk about a surreal day!

On Friday, we went to NYC to see Blake Shelton. Naya wasn’t feeling well in the afternoon, so we bailed on the concert and just stayed in. About 24 hours later, on Saturday evening, she developed a low grade fever so I took her to the CHOP ER. By the time we arrived at the ER, her fever was gone, but the blood tests revealed that her sodium levels were very low. Thank God for the fever which forced the trip to CHOP. They released us at 3 a.m. on Sunday after giving her some fluids and sodium. On Monday, her sodium levels were back in a normal range, and now she’s literally Back in the Saddle.

Each day is a new day, and with it, we stay positive. The big activity in the house is raising money for cancer research. You know about the Parkway Run. Next up is a bigger idea that Naya and I are kicking around to really make a big difference. Stay tuned. In the meantime, we look forward to your support at the Run/Walk.

http://chop.donordrive.com/team/teamnaya

Follow

Get every new post delivered to your Inbox.

Join 720 other followers