Nadir - Right On Schedule

As you can see by our very sophisticated in room tracking system, Naya is rebounding and heading towards discharge. The key number to watch is the ANC ratio. Two days at zero and today showing the tell tale slight increase as her body starts to produce white blood cells. After we reach 200 we are out of here which hopefully will be tomorrow. 4 to >200 is a big jump but usually how her system works so hopefully she continues her normative behavior and we can make like a tree and leave!

Halloween - a tale of two nights

We thought Naya would make it to Halloween since her counts were in decent shape earlier in the week. As you can see from the photos, she was pretty strong as she celebrated Karolina's birthday and her new 5S on Monday and Tuesday. Unfortunately, Naya was feeling lousy all day yesterday. We just new something was brewing. When her counts bottom out, we end up at the hospital. Last night, she dressed up as a zombie (pic didn't turn out so great) and headed out. Within a few minutes we headed back home. Eventually we ended up in the ER and were up all night.

She is on meds to fight off what is likely a minor bug for all of us but can be major for her. She is resting and feeling better. We are probably here 4-5 days the.n back home.

Hopefully we can use the time to get through some math and reading once she regains her energy.

One more round, one more round.

Working at the Car Wash

Well not actually working, more like hanging and enjoying feeling good just two days after the 5th cycle of chemo. Only one more cycle to go and then hopefully we don't ever have to go through another treatment. You know, I don't know what the process is movingPast the 6th cycle. I better get on finding that out so I can share the process with you all.

Great nurses and Round 5

Round 5 of 6 began yesterday. Things are going smoothly and Naya is taking things in stride. Each time we come here the routine is pretty much the same. After her initial large chemo dose, we are in the room for about 24 hrs until Naya is allowed to leave the room. We are basically online all day chewing up bandwidth on CHOP's network. While I work, Naya plays games, watches TV and listens to music on her iPad mini. That device has been a sanity saver! We just got back from a walk to the gift shop (options are sparse here) and are just hanging out. Tomorrow she gets another chemo treatment and we are then released in the early afternoon.

She is keeping up with her schoolwork and looking forward to Halloween next week. She isn't disclosing her costume until next week, so you will have to wait and see.

Here is a picture from a few minutes ago. Her face looks full due to the fluids she gets during treatment and her weight gain. She is within 5 lbs of her weight in February which is helping her energy a great deal.

The other picture is with two of our lovely and favorite nurse practitioners who are on Team Naya and happened to wear the same shirt earlier this week. We wanted to give Connie and Rosanna a shout out for everything they have done to help us and Naya. Thank you!!

Lucky horse

Naya has been a busy girl since the walk. As you know, she was admitted the day after for an infection and had her Gtube removed. After getting released from the hospital about 10 days ago, she has been healing quickly, studying math and English, and visiting the barn among other things. We are likely to go into round 5 this week if her counts are high enough. Here are some new pics to enjoy!

Bounced Back Big Time

We where discharged Saturday thanks to nurse practitioner Cindy, Dr's. Phillips, and Fisher advocacy with the infectious disease team. So her counts have bounced right back and she is feeling strong. Now of course since she is doing well I decided to have surgery. Here is my newly fixed knee.

Grinding Through The Post Chemo Blahs

We are still having fun and keeping a positive outlook. Naya had her G-Tube removed which is closing and heeling nicely but that means she is back on the NG-Tube which is a bummer. The doctors thought the infection that always ensured after her treatments was not worth the benefit of not having to place an NG-Tube every time she was nauseous. We are still having fun though. Take a look.

Inspiring Day at the Parkway Run/Walk

Wow, yesterday was just an awesome day!  The day couldn't have been more perfect...sunny and crisp but not too cold.  Philadelphia was at its best.  We started bright and early to set up the tent and make sure our team was equipped with TEAM NAYA shirts, tattoos, donuts and buttons.  Then, our friends and family came in by the dozens.  By 8:15, our tent had hundreds of people who came to support Naya, our family, and pediatric cancer research.  It was a terrific sight.

Once the tent craziness subsided, Naya was honored on stage for leading the top fundraising team.  TEAM NAYA team raised over $56,000, and CHOP raised over $1 million for cancer research - a record for the event.  

Naya held up pretty well.  Her counts were and are very low but the Four Seasons made it easier on her by loaning her a golf cart to join the runners and walkers.  She and Hank finished the race in 50 minutes, and all of it with a smile.

We have dozens of pictures to post.  If you have pictures, send them to me at ashah1@me.com.  I'll include them in a photo album which we'll post sometime in the next week.

I want to thank all of you for coming.  Some of you traveled across the country to show your support.  Many got up at 3 a.m. to drive to the event.  I finally had a chance to see some of my closest friends.  The love and energy everyone brought to the day could be seen, felt and heard by 9,000+ people that came to the event.

Special thanks to Team Alliquippa, The Haverford School and The Agnes Irwin School (AIS).  Your support meant the world to Zak and Naya. AIS faculty, friends and families joined in full force with at least 75 walkers and runners.  We were in awe of the AIS faculty and students who showed their support even though many had never met Naya.  

Yesterday, we made strides towards beating Naya's disease.  We've just begun.  Let's band together to kick this disease.

Race Day Update and Details

The Parkway Run & Fun Walk – Day of Event Information Sunday, September 29th is drawing near and we are proud to say that your support has made TEAM NAYA the top fundraising team for CHOP, surpassing $50,000!  Also, with over 200 runners and walkers supporting us, we will have a very large turnout for Naya.  Our family is humbled, excited and in awe of your support for Naya.  Thank you so much!  For those of you who will be participating in the event on Sunday, September 29th, below you will find Day of Event Information about both general event details as well as TEAM NAYA specifics.  If you have additional questions, please contact me at ashah1@me.com for more information. You can also go to the event website www.parkwayrun.org.    EVENT SCHEDULE 7:00am                        Registration Opens (If you registered through the website, bibs will be at our tent). 7:00am ish                  TEAM NAYA tent opens. Tent is next to the Dunkin Donuts tent. Pick up bibs at the tent. 8:00 am                       Opening Ceremonies (Naya will be recognized during the ceremony) 8:35 am                       5k Run runs FIRST, followed immediately by the Family Fun Walk 9:15am                        Four Seasons Breakfast Buffet Begins 9:45am                        Award ceremony 10:30 am                   Event concludes WHERE & WHEN? The event will take place outside the Four Seasons Hotel at 18th Street and Ben Franklin Parkway. TEAM NAYA has a tent that opens at 7:00am. Runners should pick up bibs no later than 8:00 am at the TEAM NAYA tent.  The Run begins at 8:35am followed by the Walk.   The TEAM NAYA tent is next to the Dunkin Donuts tent, not too far from the main stage. PARKING Street parking is very limited. The nearest parking garage is at 18th and Cherry Street (one block from the race start). There are also additional parking garages in the area. Arriving early will pay off in attaining parking more easily.

Final Days to Give - http://giving.chop.edu/goto/TEAMNAYA

The Parkway Run/Walk is coming up, and there are just a few days left to donate.  Hundreds of our friends, family, your friends and family, and many others have already given to our team.  Your donations are used to support pediatric cancer research at CHOP - a leader in treating and curing pediatric cancer.  Advances by CHOP are shared and used by the nation's pediatric hospitals and benefit kids all over the world.

With your generosity, we've raised over $46,000!  Donations can be given up to Saturday Sept 28th in case you haven't had a chance to donate.  Use the link below to get to our team site and remember to take advantage of your company's Matching Gift benefit.  If you have a matching gift, in the free form box of the matching gift form, type in "Please direct funds to the Parkway Run/Walk and Team Naya".  All donations are tax deductible.

http://giving.chop.edu/goto/TEAMNAYA 

Thank you again!  I'll send an update with race details later today for those of you who can join us at the Run/Walk on Sunday.

In the spirit of the season, I also thought I'd share a photo of Naya and Mr. Scarecrow from last Halloween.  We're resurrecting him this weekend.

Celebrities - No Nerves Here

http://abclocal.go.com/wpvi/video?id=9259592&pid=9255557 Check it out. This ran on the local news this morning.

Rock 'N Roll with Naya

We are in the home stretch week before the Walk/Run.  We've raised over $41,000 as a team, and will be joined by 230+ walkers/runners who are bonding together to find a cure for pediatric cancer.  CHOP is hoping to raise $1 million and hopefully our team will be a big part of reaching that goal.  All I can say on behalf of Naya and the CHOP team is THANK YOU SO MUCH!  You have all been so generous with your support and we appreciate it so much.

I will email the registrants and update the blog later this week with logistics about Sunday.  The one thing to remember is to find us at the Team Naya tent if you've already registered.  You don't have to stand in line if you've registered online, so save yourself time and join us at the tent.

Some of you have asked about Company Matching contributions.  If you work for a company that matches donations, here's what you do...Go the your company's matching site, and look up the Children's Hospital of Philadelphia.  Choose that option, and in the notation box, write in the following:  "Funds should be directed to Team Naya and the Parkway Run/Walk fundraiser for cancer research on September 29, 2013."  Your matching funds might not appear for a while, but the CHOP team will be able to eventually get those funds allocated to the pediatric cancer research fund.  Remember, all donations are tax deductible.

Quick update on Naya - On Thursday, she had her 4th round of chemo.  She was released on Saturday and is recovering.  It seems to get more taxing on her each time, but she keeps her head up high and powers through it.  We're giving her pre-meds to help her ward off an infection as her counts will be very low by the time Sunday rolls around.  Let's hope they do their job!

She's been talking more and more about the event on Sunday, and cannot wait to greet all of you in person.  Here's a picture of her with the tattoo, which will be distributed at the tent.  For you Alliquippa Stable fans, the pillow she is using was a gift from Paint Jack.  Just a warning...the tattoo stays on for days!  As you can see, she's ready to rock with you!

ZUMBA - Shake it for a Cure

Zumba Party is this Saturday. Come on out and Shake it For a Cure.  Donna is going to throw a crazy party so please help by participating.  She is raising money for Naya's Four Season's River Parkway Run in September - http://giving.chop.edu/site/TR/Events/ParkwayRun?team_id=12770&pg=team&fr_id=1500.

The event will take place Saturday, September 21, 2013 from 2:00-3:30pm (doors open 1:30pm) and will be held at the Brookhaven Community Center gym (next to Fire & Police Depts.) 2 Cambridge Road Brookhaven, PA 19015.

The cost is $20/pp, tickets are available in advance and at the door.  If you want to purchase an advance ticket please leave a comment and I'll email you back with how to get the tickets.

So get ready to shake it and have some fun for a great cause!

SIGN UP FOR TEAM NAYA BEFORE DEADLINE

SEPT 20TH DEADLINE FOR ONLINE REGISTRATION - SIGN UP FOR CHOP WALK/RUN

Friends and Family,

We hope you can join us at the upcoming CHOP Parkway Run/Walk.  The deadline for online registration is September 20th at MIDNIGHT.  If you are thinking about coming, please sign up online to save time, and help us order enough shirts for the team.  If you miss the deadline, you can always register at the race.

At last count, we were at 160ish people joining Naya on this crusade to raise money for pediatric cancer.  Many of the walkers/runners are from Naya's school!  We have tattoos, shirts, donuts and buttons waiting for all of you who will join us.  Also, there will be a limited quantity of Team Naya water bottles for sale at the event with proceeds going to CHOP Cancer Research.

If you can't make it, we encourage you to donate for a good cause if you haven't already done so.  Thank you to all of you who have given to the Team.  With your help, our team has raised $35,00+!

See you at the Walk!

Good news - Another mountain climbed and conquered

We just got off the phone with Naya's doc.  Her MRIs came back "great" today.  Her spine is almost completely clear, and significantly improved.  Her brain looks great too.  There is some residual from the brain surgery which showed up on the scan, but it's expected and likely caused by a mix of surgery healing and radiation. Her brain scan has improved from the last scans.

We also learned that Naya is 1/2 way through her maintenance phase.  She has 3 more cycles left.  This means we might be done with chemo by Christmas.  Then, we hope to be counting the years of remission.

She is going into her next cycle likely next week if her counts are good enough. This means she will have very low counts for the Parkway Run/Walk, so we're working with the docs to help make it easy for her to be there and great over 125 walkers so far that have signed up to be with Naya.  If you are with us, you may see her in a mask, but hopefully you'll understand that it's for her safety and not her desire!

Please comment back to show her your support and excitement.  I'd love her to get inundated with your comments :)  This is THE BEST news we could have hoped for.

Happiness is going to school

Today, Naya went to her first day of school - just like the rest of her class. She was beaming from ear to ear! I haven't seen her so excited about school :) She enjoyed seeing her friends,meeting new teachers and just getting back into her groove. Of course, science made the top of her highlights for the day.

As a parent, today was the best day for me. To see her so happy and excited was such a gift. And, it shows that taking things a day at a time is the best advice. Only yesterday, she was still inpatient at CHOP.

All of your prayers, support and good wishes have helped us get this far with a positive outlook. I wanted to share her good day with her followers. Please Keep sending your good wishes, energy and prayers. We love all of your for your generosity.

Waiting and waiting at CHOP

Well, Naya has been at CHOP since Thursday. Her counts were very low as a result of the chemo about 2 weeks ago, which then exposed her to infection. With her counts so low and an infection, the protocol is to stay in the hospital and take antibiotics until her counts rise. We almost expected this to happen as it happened the last two rounds. She is in good spirits but pretty bored. We have watched a LOT of TV and are finishing some school work in preparation for 5th grade.

Her low counts gave her a big bruise from a minor shot. She wanted me to take a picture but I wanted to spare her followers.

We are hoping counts begin to go up soon so she can see her classmates and start school with everyone. One day at a time.

Getting Ready for School & CHOP Walk

The week began with Naya's 3rd round of chemo. She had tough days on Tuesday and Wednesday, but is feeling much better now. 

Like all 10-year olds, Naya's gearing up for school to begin. She is finishing up required reading and in good shape to begin 5th grade thanks to great tutoring by her teacher Julie. On Friday, we went to AIS and bought some uniform items including her 5th grade kilt and other fun AIS garments! While there, we ran into her lower school principal who shared exciting news...5th graders are allowed to wear nail polish! Naya's sporting 5 colors now in various shades of blue/teal/turquoise, so clearly that was welcome news.

We are also gearing up for the September walk/run. If you haven't done so, please sign up to walk with us and/or donate.

I want to thank Sheri Reber for designing a logo for our team that symbolizes our cause with Naya's love for horses and her favorite colors. Sheri herself loves horses and is so warm and very talented. We are getting shirts for the walk made using the logo and ordering some tattoos for the walkers.

TIME TO SIGN UP AND SUPPORT TEAM NAYA

We have less than 50 days to raise funds and sign up walkers! You can support CHOP and Naya by either walking with Zak and Naya, or donating to her team. Go to our team website TEAMNAYA and click on the Donate or Join buttons on the left side of the team page, and follow the directions. Your gift is tax deductible and greatly appreciated. Together we can make a difference for Naya and the lives of kids who have been affected by cancer.

A Fun Day With the Phillies and Cliff Lee

 

Naya was invited to watch the Phillies practice, and meet Cliff Lee.  She had a great day, and so did Zak.  Thanks to Cliff Lee and CHOP for sharing such a great experience with Naya.