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!

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

 

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.

A Week Full of Life's Ups and Downs

[wpvideo YSCv7B2l]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

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

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...

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

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

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:

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

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!

Naya 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.  

Naya a Busy Bee

Swimming and snorkeling with fish and stingray, meeting Cole Hamels, hanging with cousins, making mom feel so privileged on Mother's Day, convincing Aunt Donna to go on the Tower of Terror, watching fireworks at Epcot, and just hanging with her brother.  What a month it's been so far.  We still have a birthday to fit in, and hopefully a party and Hershey Park visit.  In the meantime, enjoy the pictures.

Naya and Nature, and a Birthday Wish

Our kids have lived in big metropolitan areas - San Francisco, Toronto and now Philly.  Yet, Naya is more in the Pioneer Girl category, surrounded by animals and Mother Nature.  Her dogs, horse and recent visits to hang out with Dolphins keep her days fun while she balances the physical and emotional effects of beginning chemo treatment again.  She also spent some time in Lancaster County with her Aunt Donna and Uncle Jeff last week, and enjoyed bird watching, riding on a tractor, and picking fresh asparagus from the field.  

As the month moves forward, we have a lot going on. She's planning to spend a couple of days in Orlando, with the highlight of the trip being....you guessed it....swimming with dolphins. We also have a birthday to celebrate on May 27th, when she turns 11!  This is all going on while she is going through treatment, so we'll take things a day at a time and see how she feels.  

If you want to do anything for her birthday, she is asking for donations to Children's Hospital of Philadelphia.  We have set up a fundraising site, where all funds will go towards research to cure pediatric brain cancer http://giving.chop.edu/goto/nayasummy.

It's Been a While

Since we updated the blog and I know you are all wondering what's going on. At the beginning of April Naya had her regularly scheduled brain and spine MRI's and we found a lesion on her temporal lobe. So since then we have been doing more tests as well as some procedures to maximize her treatment options. We have started treatments again, last Friday, and will again take it one day at a time.

As you can see, Naya is still in love with PaintJack and is back riding two days a week working on building her strength and of course having fun.

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