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


Naya in Monterey overlooking the Bay


Zak & Naya overlooking the Pacific ocean near Big Sur


Naya on the boat getting ready to watch some whales!


Naya on her picture taking mission while whale watching


Summy’s at the Ferry Building in San Francisco


Family at the Marin Headlands

Zak & Naya at the Marin Headlands

Zak & Naya at the Marin Headlands


Naya smelling the roses in Healdsburg


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.

Get Your Watch Fixed at Benari Jewelers & Support TeamNAYA



Benari Jewelers in Newtown Square and Exton are teaming up with Naya to support the Parkway Run/Walk this September.  Rachel Benari and Bobby May (shown in the picture) are great friends of ours and absolutely adore Naya.

If you need a new watch battery, they’ll get your watch ticking again and donate the entire battery cost to TeamNAYA. While you’re in the store, tell them you know Naya and I’m sure you’ll get a big smile too.

We have two months until the Walk.  Remember to sign up or donate.  All funds go to The Children’s Hospital of Philadelphia and will be focused on research to cure pediatric brain cancer.  Here’s the link…

To donate to TeamNAYA, go to


Summer Fun, Hershey and Parkway Run Coming Up Soon

We haven’t posted for a while. It has been a busy and good summer so far for the family and Naya. Between her treatments, Naya’s stayed fairly active and enjoyed the summer weather and scenery.

She’s been relaxing in the pool, seeing her cousins and on occasion, rides PJ. We finally made it to Hershey Park, and also visited her Aunt Donna & Uncle Jeff in Lancaster. It was a great trip. Highlights including daily picking of black raspberries from the garden, going to the Farmers market, and of course, Hershey Park. The Park was a blast for all of us. Naya mandated we ride roller coasters, so that’s what we did for pretty much the entire time. We stayed at the park through the afternoon, took a cat nap in the middle of the day, then back at the park in the evening. I was totally exhausted!

She’s managed to fit in golf cart driving, and even some school summer reading.

She is still in treatment, and it can be hard for the days that she gets the meds, but she’s holding up pretty well all in all.

We are also getting our act together for the Parkway Run. We still have $95,000 to raise, so we’ll need a lot of help and support. Remember, this all goes towards research for a cure. Here’s the link…IMG_1274




Let’s Raise 100,000 and Help Save Kids’ Lives

2013 Parkway Run photo

2013 Parkway Run photo

Let’s raise $100,000 to help save kids’ lives.

It’s time again for the Children’s Hospital of Philadelphia’s Parkway Run.  Last year, TeamNaya raised $58,000.  All of that money was directed towards pediatric brain cancer research, and used to help find new cures and therapies for Naya and other kids like her.  This year, we want to raise $100,000 with your help.

To reach our goal, we are hoping to grow our team so that you and others can also fundraise on behalf of TeamNaya.  There are a few ways you can get started.  Sign up for the walk and walk with us, join our team and raise funds on your own for the Team, or simply donate any amount to help us get started.  To do any one of the three, use the following link:

Also, this year we are going to try selling items to help raise money. More to come on this front, and if you have your own ideas, feel free to send them to us and we’ll promote them for you.

We can’t wait to see you this September!


We Should All Have BirthWeek Celebrations!

IMG_1230 IMG_1231 IMG_1237Naya had a great week celebrating her 11th birthday. Her energy was generally good all week, which allowed her to enjoy everything she wanted to do. It got off to a bang with about 70 text messages wishing her a great day. Thanks to all of you who sent or are continuing to send her messages.  She had great fun reading them, and asking us who some of you are.  I’d encourage all of you to think about the same idea for your kids.  It’s better than Facebook bday messages!

She had love and friends all around her all week long. The week consisted of a mani/pedi, Godzilla movie (which was really good), dinner at her favorite restaurant, riding PaintJack and finally, a pool party exactly as she planned it. We didn’t make it to Hershey Park yet due to the threat of rain so that’ll be a different day.  The cake was also awesome as it’s designed to look like PaintJack.

She managed to do all of this while in treatment.  Her docs allowed us to move one of her treatments by a day so she’d have a great day.  She’s also off her tube right now as her appetite is improving.  She’s almost at the weight she was before this all began.

Enjoy the pics!


Naya’s 11th Birthday – Text Wishes to 610-999-9258

Tuesday is Naya’s 11th birthday, and a well deserved one!  We’re planning about a week-long set of fun things for her to do, while working around her treatment.  We’re timing things so that she hopefully feels great and has a wonderful day and week.

Please text your wishes directly to her at 610-999-9258.  She asked you also include who you are in case she doesn’t recognize your number :)

We hope to spend a day at Hershey Park, go to the Devon Horse Show, and have a fun pool party with her friends and family.  With summer here, we’re hoping she gets to see her friends more and enjoy the pool.  Image



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