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!

Naya and Mom Naya 2 Naya 1

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.

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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!

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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.IMG_1441

Hillary & Naya Sighting

Hillary & Naya Sighting

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 :)

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Naya with Naya at CHOP

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Naya taking the lemon shot challenge

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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.

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