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

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]

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.


20130430-090509.jpg Last Thursday Naya entered into the next, and hopefully last, phase of her treatment plan.  She has eight, six week chemotherapy treatments ahead of her.  Each six week cycle starts with a hospital admission for 3 - 5 days where she is administered the bulk of the chemotherapy drugs for the entire six week cycle.  After the hospital admission portion she then goes in each week for blood analysis and another dose of chemotherapy, vincrystine specifically.  So the beginning of each cycle is the hardest on her and the remainder of the cycle gets progressively less invasive.

She is doing great so far on her first cycle.  She was in the hospital from Thursday to Saturday last week, right on schedule.  It did rock her pretty hard from a nausea perspective and we had to go back to the clinic on Monday to get fluids and steroids to help turn the corner so she could keep food and fluids down.  This did cause her to go back on the NG tube to relieve the stress of trying to eat and get her required calories when she just doesn't feel like eating.  We are getting back in the groove though.  This morning she work up hungry and wanted to try pancakes.  A great sign.


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!


We Don't Need No Stinkin GA

General anesthesia is in our rear view morrow and we are rounding the home stretch! Seven more days of proton radiation and then 4-6 weeks off from treatment.

20130418-121329.jpg After the break we will get a new MRI and determine treatment efficacy. That is a high drama event. You want to understand how successful treatment was but at the same time you fear you may hear we need more or other treatment measures.

Anyway you think about it, 4-6 weeks off will be great. Lots of swimming and visiting the horses.

Getting Better All The Time

"It's getting better all the time." I'm not sure John and Paul where thinking about Naya when they penned that hit but still it applies. She finished up the week with spinal radiation only on Friday as her brain treatments are over for a few days which gives her time to recover and gain some strength. After radiation yesterday she picked up a lot of swag from her AIS school friends in pre-k, k and her 4th grade classmates. She had a blast checking it all out. Take a look at her surrounded by all her cool gifts.

This morning she is reintroducing Cheerios to her system in small quantities to augment the liquid nutrition she is receiving through the feeding tube you see in the picture.

If you are wondering about her forehead peeling, that is from the cranial radiation. It's the same as a sun burn which, given her Indian genetics, she has never had so another new thing Naya has to sort through.

20130413-090002.jpg All in all, she is powering through the treatment and getting stronger. The resident just came in and told me her white cell count went way up since yesterday to 1437 which is great. That means her bone marrow is producing immune system necessary white blood cells used to fight off viruses and most importantly necessary to get out of the hospital and return home. No promises but if mom and dad get trained on how to use the NG feeding tube we just might blow this joint.


Tell Me Why, I Don't Like Mondays

After coming out of radiation last night and getting home we turned around and headed back to the hospital for an all nighter in the ER. Naya's temperature spiked and given her weakened immune system that means we have to get into the ER, start a full spectrum antibiotic regiment, and get a blood culture taken to see if there is any bacteria we need to specifically address. Around 5am we finally found our way to PICU where we settled in for the day. After all that if was decided we should skip chemo and radiation treatments for the day and just rest and build up our strength. Now if only we felt even the smallest bit like eating and drinking we could get a day ahead but man food and drink just doesn't look good to us, or Naya that is.

Amy is coming in tonight to take over the night shift so maybe a change of parental scenery will bring a new perspective and make tonight smoother than last. One can only hope. As we have said many times; One Day at a Time.

Back in the Saddle

It's Monday and we are back in the routine but this week is a very different week. Thursday is Naya's last day of general anesthesia! So no more eating restrictions and hopefully that means an improved appetite and sense of being thirsty. Here is Naya and Ali listening to "Momma's Got a Shotgun" by Carrie Underwood. You all know Naya is a big country fan. I guess when all this is done she can get her horse and ride the range.


If It's Monday, Ports Must be Accessed

Every Monday we start our week off, after the deal, with accessing Naya's port for the week. She is in great spirits and ready to take on the week's challenges. Take a look.


Dad on the other hand is a mess. His two fingers are numb and has shooting pain down his arm from his neck. He is not nearly as strong as his little girl.

Good Morning - No Hair Rules

Last night and this morning proved to be much better than Good Friday. Her are the three members of the "No Hair Gang" waiting for a transfusion. Send me pics of your hairless head and I will post.


Uncle Jeff:


Oh yea, and one more while Zak was working out this am. Look Bill, Bill, and Tony, he actually listens to you. Doing planks, sleepers, push ups, pull ups, and yea Gabby spots him.



A New Challenge

Today we added another level to Naya's treatment. Two types of chemotherapy plus proton and photon radiation which Naya pushed through like a gladiator. When we got home, however, she felt cold so we took her temperature and it was high. Off to the ER to make sure she didn't have an infection. Her blood work looked good, they gave her antibiotics and plan to discharge us in the next hour. Another long day but we are fighting and working the treatments. It's what must be done so do it we will.


Another Day, Another (well you know?)

We are getting into somewhat of a rhythm. But man, Amy and Naya had a long day yesterday. I was in NYC, came home around 7:30, and they were just getting back from the hospital, 12 hours from when they started their day. The radiation table was down so they had to wait a long time to get the treatment completed and then she had a 2 hour blood transfusion post general anesthesia recovery that made for a lOOOOOOOOOOOOOOOOOng day. Today we have one extra treatment of antibiotics so hopefully we can wrap up much earlier and we can get home to start pounding calories. Important stuff when you only have 4 - 6 hours to get the entire day's allotment of nutrition.

Check out Naya's new Alliquippa jacket Katie and the gang at the stables sent her yesterday. She was so excited to wear it when she opened up the box it made getting up and going into therapy almost worth it. Thanks guys!