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.

[wpvideo Ozzor2ms]

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?

[wpvideo uKpK6aqf]

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.

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?

Too Cold For The Pool? No Problem

The pool is open ready and willing. The new floaties are ready for use so what gives? Let's hang out and chill in the family room. Life is good.

Phase 1 Treatment Complete, Now Back to Work

Okay so the first phase if treatment is complete today! Sweet! Now let's get back to working on the important things like cupcakes.

Working Out at Decarlo's

[wpvideo 5OZHO3SF]We got to Zak's hitting lesson a little early so Naya could take a few cuts and work out. Hey Naya's Oncology team! What do you think about that coordination? 3-3 and if her brother didn't get bored and through the ball to the ceiling she would have kept the streak going.

Thanks to Mike Decarlo for letting us use a cage.

A Day at the Park

Well the fans where great, take a look, but the Baker team, the team that Zak plays on didn't bring their 'A' game to the park today. Zak pitched well but went 0-2. He is still leading the league in home runs though. Even though it was a tough loss, having Naya on the bench softened the sting of defeat and made my day much, much better.

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.

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.

The Weekend

Our day started at 5:45 with a trip into the hospital for an MRI to determine where protons should be applied in boost mode. That was followed by a chemical blood composition, then the normal chemo treatment and then over to PMAC for X-rays and protons under general anesthesia! All that was followed by a trip back to clinic to receive a platelet transfusion. Phew! We are all done and ready to leave the hospital.

Hair Support

Here is the before and after of Karissa. The daughter of a dear friend of mine and Amy's. Thank you Karissa for your support. We live your new look.

Before:

After:

Karissa's Hair Art:

Kailei and her Mom Shannon

Now this definitely sets the bar at a whole new level. Kailei and her mom Shannon joined the short hair club with a respective 12 and 10 inches removed today in honor of Naya. Thank you both for your support. All of us, especially Naya love the demonstration. Take a look at beautiful Kailei:

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.