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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Obsessed with Shoes

Naya's been on a shoe kick lately.  Here she is in Vail with custom-made boots.  They even let her brand her initials on the floor of the store because we've been VERY GOOD customers :)  She also went to school yesterday with bright pink laces to contrast with her lovely purple Nike shoes.

Zak and Naya on Top of Avanti Express in Vail, CO - Grandma Would Be Proud

Naya once again showed us how to tackle fear, live life, and get out there and "just do it!"  We have been in vail all week.  Mother nature cooperated magnificently providing seven inches of fresh snow on the day of our arrival, then over the last two days another eighteen inches of fluffy powder.  Of course, during the first few days Naya was adjusting to the altitude so she was more focused on keeping hydrated and topped off with calories but as you can see above she was determined to get out on the mountain and tear it up with her brother. We all started off on chair lift number 1, not the gondola because that would be too easy and not our normal routine so she donned her skis at the base of the mountain, skied right over to the quad lift, got scanned by the Vail folks, hopped on the lift, jumped right off at the top of the hill and skied down to the next lift, Avanti Express.  From there we went up to the top of the mountain, down the other side, up to Wildwood Lodge for a hot chocolate.  While we where taking in the sites from 11,000+ feet her nausea got the best of her and she did get sick but as you all know that wouldn't stop Naya.  She went into the bathroom with her mom, took care of business, came out and then skied down Avanti, a blue run with a black diamond section in the middle.  The snow was deep, some places over a couple of feet, she kept her goal in site and made it down the run.  Then hopped on the lift, back up to the top of the mountain and then down to Eagle's Nest gondola for a casual, amazing vista, ride down to grab lunch and chill.

Reflection?  Twelve months ago she was in the hospital recovering from two brain surgeries, receiving radiation therapy and chemotherapy, and, as only my 10 year old daughter can, showed me how to conquer fear and "just do it!"  She is AMAZING!

Grandma Taru - We Will Miss You, But Never Forget You!

Last night we lost grandma Taru.  She passed in her home where she was most comfortable and a vital member of her community.   Her friends and relatives describe her as strong, loving, proud, opinionated, smiling and always a pleasure to be around.  They will miss her, and so will we.  

She will certainly be missed but not ever far from our thoughts.   She gave so much support to Naya through her treatments, plus her other grandchildren - she had four - and was always there to help us and them.  She used to do anything to help, from watching Naya, making great Indian food in a pinch, watering our plants, cleaning up, and taking care of the kids.  She was a real salt of the earth.

We will miss you grandma. We will remember all the fun things you did with us, your smile and your generous heart. Thank you so much for all you have done to help Naya.  We love you!

Yummy hot chocolates save the day

Naya's been making progress every day transitioning back to school, getting into a more regular eating routine and enjoying some of her favorite activities including shopping for jewelry, perfume, dresses and horseback riding.  She is going to school almost every day for 2-3 classes, keeping up with math homework and about 450 calories away from being off of her feeding tube.  

Starbucks hot chocolates, with whip of course, have been a staple.  We've become experts on the calorie counts in tall and grande sizes, with whip, syrup, and milk.  Thank goodness for Starbucks!!  

Here is Naya studying fractions, completing her math assignment and giving herself the calories she needs to become independent.  Her nausea has improved too.  We're hoping things continue as we get ready to go to Vail this month and enjoy time together as a unit, reflect on the year, and hopefully enjoy Vail.  For our friends in Denver, we'll send out an email to see if we can get together and see all of your lovely faces :)

Reflections

A year ago today, Naya was admitted to the ER with what we thought was a stubborn infection. As you know that day changed our lives and the lives of many people around us.  I thought I'd take a few moments and share some reflections (and cliches) from the past year:

• Your inner strength will surprise you.  We are much, much stronger than we imagine.
• Life isn't meant to be "in control".
• Do your absolute best every day.
• Every day is a new day. A bad yesterday doesn't mean today can't be great.
• Fear requires no evidence; it just exists and it's your choice how you face it.
• You are not alone, ever.
• Being a parent is an awesome gift and responsibility.
• Your kids watch you at all times. How you behave will get them through adversity, or not.
• Surround yourself with people who really are good to you.
• Embrace new friends who show compassion and heart.
• Best friends are always best friends no matter how long it's been since you spoke.
• Look to your extended communities for strength.
• Rid yourself of people who wronged you. They don't deserve your time. They know who they are.
• Tough times force bold decisions. Make them and don't be afraid.
• Commit to living an amazing life every day.
• Buy a horse. Get a dog or two. They bring peace when nothing else works.
• Love your kids. They need it and will pass it on to their kids.
• Love your spouse or partner.  He or she will get you up when you are at your absolute weakest.
• Give back, be generous and be kind.  Your life will be richer when you do.

I'm sure there's so much more, but that's it for now.  To our friends and family, thank you for being with us an entire year.

It's Been a While

Since I saw your eyebrows adorn your face. Okay, not nearly as good as Aaron Lewis penned but still a beautiful sight to see. What a great tune! Hair is coming in, eyebrows are getting thick and we are working on longer school days and more food not through a tube. All good things for sure and Gabby and Duke seam to like it.

Murphy Pulled Through

Just like the best friend he has been for 8 years, Murphy went into surgery with Naya and I'm happy to report he pulled through and even comforted Naya through the journey. Naya came out of surgery and is feeling strong and happy to have that port out of her.

It dawned on me that it may not have been apparent that Murphy's boo boo matches Naya's which is located under her right shoulder just like Murphy's.  The docs at CHOP operated on him and made him all better.

Winding Down

Here we go! Let's get this dang I.V. Port out of my chest and the catheter out of my heart. Hanging around waiting for anesthesiology to come in always seams like it takes forever especially when you can't eat and drink and haven't do so since the night before. The procedure will take 1 - 1.5 hours then we will warm up in post op and head home to get some food and water going.