Slow Down

A special person I work with always says "slow down to speed up". His words are true in work, and in life.

Life passes by too fast. Multitasking, electronics, media, double-booked meetings, tasks and activities all make it fly by. I'm choosing to be fully present. It simply makes my life richer and better. And, being present actually speed some things up.

A recent vacation forced me to step back and face my changed life head on. Being in Vail wasn't easy without Naya,but I needed to do it, and I didn't know why. I think it's becoming more clear.

I made space for myself to grieve, and realized I've only just started to feel the immenseness of my loss. I continue to imagine myself with Naya, holding her in my arms, laughing with her, and loving her as only a mother can. I want her to feel my love from wherever she is, and I want to feel her love through my grief.

I've made more space for my husband, and am helping him as he gets back to being the bigger than life person he has always been. I SEE Zak as a young man with great humor, world opinions, quirks, empathy, maturity and deep intelligence. I've made time for great friends, and had meaningful conversations with colleagues and new acquaintances. I'm fully engaged at work, and bringing my whole self to the game.

I've found more and more that people are giving, selfless and caring. From a lending a shoulder to cry on and ear to listen, to donating, honoring Naya through bake sales, helping us get her foundation off the ground and more. And, there are people who suck your time, stress you out and aren't in the first camp. My trick is to make sure the time suckers don't cause me to lose perspective or be negative. It takes practice and reflection every day, but it can be done. And, you will be happier.

Dear Naya,

We hope you're happy and smiling down on us. I imagine you with Grandma Taru, Grandma Betty, and Grandpa Bhupen all the time. I know they are taking good care of you. I hope you're enjoying Rekha. I feel you at times watching over me and smiling. Thank you babe.

This has been a busy month. I didn't have much time to just be with you. No matter how busy, I was determined to keep your cause moving forward. But I'm sure you knew that. I was at AIS this week. I love that school, but I shouldn't be the one going there, it should be you. A lot is happening there in your honor. They are going to create an award for the 6th grade which represents what you stood for, which was so much. They are also creating a space on the playground dedicated to you and PJ. Also, two Agnes Irwin girls pledged over $5,000 that they raised for your cause through their Hives for Lives club. Dad and I are creating a scholarship in your name to help a young AIS woman in her junior and senior year stay at AIS through graduation. Your classmates are also going to help us with the Parkway Run. None of this brings you back to us, but it all ensures your dream to cure pediatric cancer will be carried out and you will always impact the lives of girls at AIS.

We met Dr. Fisher and talked to CHOP too. In the last year, you raised over $200,000. Just this past week, we gave $50,000 of that money to genetically sequence medulloblastoma tumors of other children. Your tumor was sequenced, but it turns out that there's no ongoing funding to do that, so your money is going to help those kids get closer to a cure.

This month, TheNayaFoundation will be officially launched. I have many ideas that were yours, and everyone wants to help. We won't stop until there is a cure for your disease. I promise you that.

Yesterday, we took Zak and his friends downtown to the Villanova game. You would have been so annoyed with 4 teenage boys. Dad and I laughed thinking about what you would be saying about them, and how you'd be rolling your eyes. I passed the Kimmel Center and thought about the time you read your poem on stage for Dream Flags. You weren't nervous at all. I was so proud of you. And, I passed Citizens Bank Park and remembered when you walked with me for the American Heart Association and TE team. You did so much in your lifetime Naya, all the way until you had to leave our earth. More than most people will ever do.

Our heart breaks for you constantly. I imagine holding you and giving you kisses every day, and we hear you laughing and see your smile all the time. Valentine's day is coming up, and Zak's birthday. We're going to Vail. It's going to be a killer being there without you. Help me be strong Naya. Love you. Mom

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!

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.

Team Naya - CHOP Staff Tattoo'd

Check out the official Team Naya tattoos! Naya is handing them out all over the hospital. Don't worry, I'll bring a bunch to work.

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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Fruit Ninja Before a Spinal MRI

Just a little Fruit Ninja's before a spinal MRI with contrast please. 20 minutes to kill before the MRI so why not?

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Country? From my Rock Roots?

Who knew? My daughter growing up listening to G&R, Aerosmith, Led Zeppelin, Pat Benatar, etc., is a country girl. Check her out rockin out to Carrie Underwood in her CHOP room. The little wobbling in her voice is a normal side effect of the chemo.

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Shake It For a Cure - Oh Yea, Get Your Zumba On With Donna Fooks

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!

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!

Hit Me With Your Best Shot!

Naya rocked out last Thursday with Pat and Neil, yes Pat Benatar and Neil Giraldo. We had a blast and man can Pat still belt it out and of course Neil can make that guitar scream. We had a great experience backstage and Naya partied hard late into the evening. Check out her leather dress with chain link neckline!

Summer Fun

Summertime with good friends, cousins Olivia and Eli and of course Gabby. Naya is feeling great and enjoying the dog days of summer. Take a look.

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!

Homeward Bound

We are ready to blow this joint. We are out of here! We are going to make like a tree and leave. Naya and I are discharged and Homeward Bound. Simon and Garfunkle would be proud of here.

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.

Normal Day

Who says hanging out running errands like a visit to the local FarmersMarket to pick up fresh corn, heirloom tomatoes, fresh berries and local veggies isn't a lot of fun when it's with the bravest person you know that also just happens to be your daughter?

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.

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. Naya 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.

PJ & Naya

Naya is soaking in her last day with one of her best buds, Paint Jack, before the chemo starts back up again tomorrow. He is such a good boy and her favorite in the barn.

PJ & Naya

Naya is soaking in her last day with one of her best buds, Paint Jack, before the chemo starts back up again tomorrow. He is such a good boy and her favorite in the barn.