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.

Big Week Ahead

Well, Naya finally was released on Saturday. After a full week in the hospital, I think she was itching to move. Today, she got up at 6 a.m., "made me" watch the Bachelorette,  rode the golf cart around for 9 holes,  took a short walk, and now she's off to pick up Karolina who's been on vacation for a week. And, tonight, Shark Week begins! I'm exhausted just writing about the day!

This week, Naya will go to the Phillies game on Tuesday, and have the opportunity to meet the players and watch them practice before the game. We will definitely get a barn visit in, and then who knows. If all goes well, she has 15 days off before her next round and we'll take full advantage of the time.

When she came home this week, a great box of Coca Cola goodies were waiting for her which explains the next photo 

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!

Naya stars in CHOP video

Naya will be an ambassador for the CHOP Parkway Run & Walk in September. This video of Naya will appear in their upcoming promotions. Isn't she amazing?!

[wpvideo h7jArt4S]

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.

Naya's 4th grade graduation

Naya and her 4th grade classmates celebrated a very special milestone today. They officially graduated from the 4th grade and will be moving up to the Middle School next year. Naya looked beautiful in her coral dress and heels, and enjoyed every moment. The faculty, parents and students honored her with a long applause and well-deserved standing ovation.  There were many tears of joy shed today as we witnessed our special girl display such grace, courage and happiness in front of the wonderful AIS community and our family.

Pics from Naya's bday

Naya's birthday - fun, friends and flash mob

What a weekend! We celebrated Naya's 10th bday just the way she wanted it. We had a few of her friends over for a birthday party on Sunday. The sun and sky cooperated, the wind subsided and it was truly a perfect day for a pool party. The scene included great music chosen by Naya (featuring Taylor Swift, Carrie Underwood, Black Eyed Peas, Pat Benatar and other greats), a perfect cake and good food, and a flash mob-style surprise from  amazing group of AIS Lower School faculty. Naya was her old self, orchestrating the group and smiling from ear to ear for hours! It was a beautiful sight!

On her actual bday, we had more swimming, friends, family, food and ended the celebration with backyard fireworks.  

Thanks to everyone for coming and making the weekend about as fun as we could have hoped for. Special thanks to AIS teachers for the touching happy birthday songs and cart wheels.

All Good Friends

Naya is always surrounded by good friends that have her back constantly. We are enjoying the treatment break and looking forward to a long weekend. Come on sun, cooperate would you?

Wish Naya a Happy Birthday - Monday May 27

For those of you who want to wish Naya a happy birthday, you have a chance to do so this weekend.  Her official birthday is Monday (Memorial Day).  This weekend, Naya is celebrating her 10th birthday in style. She will see some friends, family, hopefully enjoy the pool if it warms up, and enjoy a few surprises. 

We hope the website for the September race will be up soon.  Naya will be asking you to donate to that cause and her team in case you were thinking of a birthday card/gift.

Mayfair Day at AIS

Last Friday Naya introduced the 4th grade class at the 2013 Mayfair Day celebration. She handled the stress like a pro, no issues. She rehearsed her lines and made her dad incredibly proud. We need a whole lot more days like this one.

It was a blast!

Busy, busy

Naya had a busy few days. She visited her class on Friday and joined them for the science adventure at the Stream. On Saturday, Syd came to visit and the rest of the day was watching TV and movies. Sunday started with Naya giving me a couple of nice cards, fun pins and a candle. I then dragged the family to the local nursery where we picked out a bunch of flowers for the deck.

Naya hung out with her cousin Olivia and all was good.

Naya's energy is getting better. Her Appetite isn't back yet unfortunately but hopefully we will see it improve.

This week is busy again. We are waiting for her counts to come back now and hoping things keep going in the right direction.

Feeling better, and ready for friends

Today was another blood test to check Naya’s counts. Her counts are in good shape, and are improving on their own. We’re hoping Monday proves to be the same, which will give her the freedom to go to the barn and for us not to put Purell on her hands 40 times a day.

She has a big weekend this weekend with sun, swim, and friends.  Next week is another big social week with a few AIS activities lined up.  

Eating is still coming pretty slowly, and she is still battling nausea.  However, she’s feeling better and having more good hours each day.  We hope the trend continues.

The most everyone can do is keep reaching out.  She lights up when she hangs out with people she loves, her friends and other kids.  After all, she is only 9, and most 9 year olds get sick of their parents after a while.  

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.

A busy weekend

Naya had her first weekend since February recovering from surgery, radiation and chemo. It is crazy to think about what she has gone through. She is getting a little appetite back and had a few hours of good energy to do some fun things with zak, her cousins and her great friend Paige this weekend.

On Friday, she had hoped to go to school but her queasy stomach nixed that idea. Instead she bombed around with Dad and got my Mother's Day gift.

Saturday was better. She saw Zak crush a few balls at his game, had a hot dog and then went swimming in our pool. She was konked by 8 but who wouldn't be!

Today was a little lighter. She did have a nice lunch with Paige and now we are chilling watching TV.

Tomorrow she has a clinic visit and we are hoping her counts went up since last week. Here is hoping for a good week for her and a better appetite.

Rest and recover

Naya has been resting a lot since finishing round 1 treatments on Tuesday. It's as if she kept enough energy to get through round 1 and the second she got a break, she allowed herself to rest. We are just going with the flow right now letting her eat, rest and watch TV. She has a lot she wants to do between now and June 13, including celebrating her 10th bday and graduating from lower school.

Here she is ringing the bell to celebrate the completion of her radiation treatments.

Easy Peasy

[wpvideo 7hygXkV2]Every thing will be easy as long as I don't have to have any more transfusions or shots. Then I get de-accessed on Wednesday! Then a 6 week break !!!!!!!

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.

The Day Can Be Tough.

So the day started with a very sharp pain in my shoulder, and that lead to a numb feeling from that shoulder down to the lower part of my elbow. So my dad gave me morphine for my pain,and the numbness went away after 30-45 minutes. So I relaxed on the couch for a bit ,and then Zak, dad, and I headed to the hospital. 5 minutes till my table time.