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

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:

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!

 

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

Zak and Naya on Top of Avanti Express in Vail, CONaya 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!

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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!

CHOP Parkway Run - What a Beautiful Day

Wow! What a great day, incredibly well organized and outrageously supported by Team AIS, Haverford, CHOP, Media Little League, Alliquippa Stables, McCANN, TE Connectivity, Family and Friends! Thank you all so very, very much! Here is the first of a bunch of pictures I'll share from the run. This is a lot if Naya's friends and her Neuro-Surgeon, Dr. Jay Storm who saved her life.

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Fruit Ninja Primer, Pre Second MRI

I know you have been waiting for this and we are so happy to be able to provide it to you today. Yes, here it is, the Fruit Ninja Primer, at last, explained by none other than our very own Naya Summy prior to going in for her second MRI in as many days. We haven't received the report from yesterday so we are anxiously awaiting the results from both today.

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The Famous Mister Ed - Well...

Naya starts her third round of treatments, out of 8, today but before she begins she went out to see all of her friends at Aliquippa Stables. So PaintJack, Scout, Camanche, and the rest of the gang. As always, she came back full of energy, giving me all the updates on all her horse friends and the late breaking events around the barn. She loves her horse buds but I'm going broke with all the carrot bribes!

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An Oldie, But A Goodie

Here is one of my favorite pics of Naya hanging onto her brother in Central Park in the spring last year. It's just so expressive I wanted to share. Naya has been in the hospital since Saturday now with an infection, pseudomonas, and zero ANC, Absolute Neutrophil Count, counts which means we will be there a while longer. She needs a count of 200 to be eligible for discharge. Your ANC count is 4,000 - 7,000 by the way.

Her spirits are good and she feels okay she just can't fight the infection with zero immunity.

With all that, I got the best birthday gift a 51 year old dad could ask for this morning around 6:15. I woke up in the bench/bed beside Naya, got up, jumped in the shower and when I got out, she looked up and said good morning dad, happy birthday!

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Lets Get It On!

We are officially cleared to begin cycle two of maintenance chemotherapy! Only six more to go :-| Naya is resolute, dug in and ready to get it on. Take a look at her sitting with me in the triage waiting room waiting for a room and the chemo. Such a great attitude! Marvin Gaye would certainly give props.

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Isn't She Lovely?

Stevie Wonder definitely had Naya in mind when he penned this hit as well as his own newborn. Look how beautiful she is even when about to go into surgery! She is having a G tune installed into her stomach through her navel so she doesn't have to insert the NG tube through her nose after she is nauseous.

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No Hair Club Does Not Discriminate

The "No Hair Club" isn't for humans only.  Horses are more than welcomed and even encouraged.  Here is Naya's best friend at Alliquippa Stables, www.alliquippastables.com, PaintJack, having his entire body shaved in support of Naya.  Now that is support!  I don't see any of you humans out there getting a total body shave.  Alliquippa is putting together a team to support Naya's Four Season River Parkway run.  Way to go Katie and Miss TJ!  Anyone else want to put together a team and join Team Naya's efforts to fight cancer please go to, http://giving.chop.edu/site/TR/Events/ParkwayRun?team_id=12770&pg=team&fr_id=1500 and sign up and help us out.  CHOP has put together a great event and we greatly appreciate the support and thank you. messagepartNaya had to go back into the hospital yesterday because she had a fever spike and protocol when your neutropenic is that you don't waste any time, you get into the hospital, and onto broad spectrum antibiotics which we, of course, did.  Yesterday, she spent the day receiving fluids, antibiotics, and having her blood drawn to see if there is an infection causing the fever.  The blood cultures take 24 - 48 hours to determine if there is something that is going to grow to figure out the exact antibiotic to use to fight the infection.  Hopefully nothing grows and she can be released tomorrow, Wednesday.  Her ANC is 84.  We like it over 1,000 so that is most likely the reason for the fever but we have to be careful because of how low her white blood cell counts are could allow an infection to run rampant through her body.

Pre-Treatment Lumbar Test

This week starts off with a lot of testing to see if Naya is ready to begin the maintenance phase of her treatment plan. This phase is eight - 6 week cycles which we hope begins this Thursday. She needs a clean lumbar tap result, her ANC counts need to be over 1000 and her platelets need to be over 100,000 based on her own capacity, so no help from blood products or drugs to boost the bone marrow to produce white blood cells. We also need another audio test baseline before the 48 week phase starts this week as well. Her is Naya and her nurse practitioner Rosanna discussing all the above. She is in great spirits and ready to take on the challenge of her next phase of treatment. I'm incredibly proud of her!

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