Nobody Said Motherhood Would Be So Painful - And Beautiful

I never thought I’d be a mom. My parents emphasized career over motherhood, and I wasn't one of those kids who experienced touching and special moments with my mom growing up.

My mom didn't fit the mold of moms you see on Mother's Day commercials. She came to the U.S. in the 1960s. She was newly married, and soon became a new mom in a new world. She was young, figuring out how to make friends, be accepted and learn a new language. She also struggled with mental illness which was most pronounced when I was young. We didn’t have much of a relationship until much later, when I was presented with the greatest challenge of my life.

Naya with her horse, Jack,  weeks after her diagnosis and first brain surgery.

Naya with her horse, Jack,  weeks after her diagnosis and first brain surgery.

Fast forward a few decades, I had my own children and built a strong career. I finally had the opportunity to create bonds with my children that I didn’t experience when I was a child. I showed my love through meaningful gifts, daily kisses and nightly tuck ins. I put great pressure on myself to be a great mom, volunteering at school functions, attending games, and working hard to be perfect.

My idea of being a great mom changed in 2013 when my daughter Naya was diagnosed with cancer. I remember sitting with my husband in the hospital cafeteria after Naya’s brain surgery. We were just hoping Naya would live; we didn’t care about the Stanford dream anymore. None of the superficial stuff mattered. We were focused on saving Naya’s life, doing what was best for her, and keeping our family together.

Throughout Naya’s journey, we faced horrifying decisions. Should Naya go through treatment? Should Naya withstand highly-toxic, deadly treatments given how widely her cancer had spread? Was it okay to try and save her life – with no guarantees - and leave her with severe lifelong side effects? Did it matter that her growth would be stunted, she would never write in a straight line or worse yet, she could suffer from another deadly cancer later in life? Yes, but we had no choice. We had to save her life.

Naya had brain and spine radiation combined with toxic chemotherapy. She was strong and determined during her treatments. She swallowed medicine while her throat was raw from radiation, she ate even though she wasn’t hungry, and kept up her studies and love for horseback riding even while her body was battered from treatments. Why? Naya loved life and wanted to live. We wanted her to live. At first, she had good odds of surviving – around 60%. It was later we learned her tumor type had almost a 0% survival rate. If we had known, I am not sure we would have put Naya through treatment.

When Naya relapsed and her cancer returned, there were no treatment options. We faced another big decision. Should we extract stem cells from her little body in the remote case a new treatment was discovered? It was a gamble, but we took it. Naya wasn’t giving up and neither were we. Huge tubes were connected to her neck for days and a loud machine extracted stem cells.

Our last vacation together, 3 months before Naya died.

Our last vacation together, 3 months before Naya died.

The discovery didn’t come, the stem cells were never used, and Naya’s cancer spread. One night, Naya was up all night with leg pains. I stayed up that night trying to make her comfortable, massaging her legs and tirelessly adjusting heating pads. She told me how lucky she was to have me as her mom and how much she loved me. That night was tough for both of us, but one of many special moments with Naya that I will hold on to for the rest of my life.

The week before Naya died, after she woke up

The week before Naya died, after she woke up

Two weeks later, the day after our wedding anniversary, Naya suddenly became incoherent. We took her to the hospital, where she soon became unconscious and went into a deep sleep. We had no idea if she would wake up. Tests told us that her brain was full of cancer, and she was having seizures that we couldn’t see. The doctors said there were no more treatments or trials. She was dying.

The question became what to do next. Doctors have many tools to keep kids breathing. Steroids, narcotics, potassium, sodium and who knows what else. We had to decide if we wanted to continue giving Naya medicines.

Here’s the thing, Naya probably didn’t know that she was dying. That’s when it hit us. If we threw meds at her, we were doing it for us, not Naya. At her expense, we would have been buying one more conversation, laugh, hug or kiss. But for Naya, it would have meant more suffering.  She could have been made aware of the scary truth that she would never grow up or see us again. We couldn’t let Naya suffer anymore. We were her parents, and we had to protect her.

In her last days, Naya woke up on her own for brief periods. We brought her home, and got precious time to kiss her, hold her, and sleep next to her. She died in our arms - her dad, brother and mom holding her until her last breath. She was in peace.

I live with the grief and pain of losing Naya every day, and at times, every minute. But Naya is not grieving and is not in pain. Every parent I know would give their life for their child, but sometimes we don’t get that choice. To me, being a “perfect” mom means being there for your kids, loving them, and making them feel safe during the scariest times of their life. It means letting your child go if that’s best for them, even if you can’t fathom the loss.

I had an amazing relationship with Naya and she and I shared a deep and beautiful mother-daughter bond. I wish all mothers who have lost their child a happy Mother’s Day. I know our kids are wishing us a great day, and I know they think we are the best moms on the planet.

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!


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.

20130930-075612.jpgTeam NayaNaya's School SupportNaya Wins Top ContributorNaya and Mom3


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.

[wpvideo Ozzor2ms]

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.

[wpvideo Ogz47FfY]

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 -

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!


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!


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.


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,, 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, 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.