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 

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]

Team Naya poster

New with Naya

Many of you have been asking about Naya. Sorry we have been remiss lately with updates, She has been doing well. Since the new Gtube went in, she is much less nauseous and more independent. It's helped her gain some weight too which is helping with her energy.

She has been catching up on summer movies lately, exercising to build strength, catching up on schoolwork and getting her summer reading done for 5th grade.

She is also gearing up for the walk in September. We have much to do - raise more money, design shirts and get the team together. But we are off to a great start with the help of all of you out there all over the world.

Naya created a poster which is shown here. If you look closely, her voice of strength is loud and clear. She is telling the world she is strong and her positive attitude has been declared in her poster.

Naya goes into her second round of chemo this Thursday so we are expecting a bumpy week or two ahead. She may go to NYC for a quick visit this week and hopefully see the horses.

Keep up the prayers, good wishes and love. She feels the support all around and so do we.

Community standing behind Naya

Some of Naya and Zak's fans came up with the idea to sell braided bracelets to raise money for Team Naya. So far, they have raised over $100! It's very touching to be supported by so many people in our school, local and work communities. Thank you to the ladies of Media Little League for their great idea and kindness. Naya is resting from her surgery. It went well and her recovery is expected to be quick. Hopefully she will see some improvement in her nausea tomorrow and next week. We plan to celebrate the 4th at CHOP but hopefully Hank will get some good fireworks for a make up celebration in the backyard.

Give me the remote Zak!

Those were the first words yelled when Naya arrived home today after 5 days in the hospital. How quickly life returned to normal, and how sweet those words were after not hearing them for days.

It took a few days, but Naya's counts rebounded to the level where it's safe to be home. She hasn't had a fever, no pains, and she is taking down food easier. Today, she even got back into her tutoring sessions and was given some homework to keep her busy next week.

We are home now, and Naya has big plans for the weekend. Hopefully a movie is in the cards, some swimming and maybe a visit to the barn early next week. And, of course, a lot of hanging out with her favorite friend Gabby :)

Back in school

Naya started her tutoring sessions today, with the objective of getting ready for 5th grade. She was SO excited and ready to have her lesson, and is looking forward to completing her homework in time for Monday next lesson. She did great today, and with a little practice will be in good shape for the fall. 

On the treatment front, last week's chemo caused some nausea which is now better. She's in great spirits and her energy is good. Her counts are low so we're keeping things low key and hoping for a smooth weekend. 

Round 2 long day

Well - today began the next round of chemo. The day started with checking Naya's counts. She has rebounded well and her counts were high enough to allow for chemo to start again. By the time all tests, results and conversations with her nurse practitioners and doctor happened it was 5 pm. She was admitted to CHOP at that time. So far, she has received one type of chemo and is now getting another type. In all today, she will get chemo for 7 hours. We are fully expecting the next several days to be tough due to side effects. Naya is facing everything as she always does-as it comes and determined to get through it. Her doctor said she is doing great so that was music to my ears.

She is also working really hard to eat and drink on her own. It's hard when you don't have much of an appetite but she is giving it her all for sure.

The highlight this evening is she lost a baby tooth. She is expecting a little more from the tooth fairy this time given she is going through chemo. I will update the blog with what she gets!

She is sleeping soundly now. Let's hope her side effects aren't too severe in the next few days. She has time in the hospital tomorrow so feel free to send her a text or blog comment to say hello.

Good news!

"MRI" these days is a very scary three-letter abbreviation. MRI has meant bad news to our family. Well, today the MRI brought good news. After over 3 months including 2 brain surgeries, 33 radiation treatments and 30 chemo treatments, Naya's brain MRI looked "great". That was the word her doctor used. He was pleased with what he saw! He expects her spine to look good too, and is now getting us ready for chemo again next week. All things we wanted to hear from him.

This means Naya is responding to the treatments. We still have a very long road and are by no means out of the woods, but this is the best news we could have hoped for at this point. 

Your wishes, prayers, energy, love and genuine support for Naya are helping us and her stay positive throughout this difficult journey. Our only ask is that you stay with us for the long haul as it makes a huge difference to her and us, and clearly is working. Thank you to all of you!

Naya wanted me to post a picture of her pre-cancer...I think because she sees a light finally. This is the first time she has wanted a pre-cancer picture of her on the blog so I think it means a lot to her too.

Sign up or donate to September's Parkway Run & Walk

Join Team Naya in our desire to beat pediatric cancer. Be in front of the Four Seasons Hotel Philadelphia on Sunday, September 29 to kick off the Four Seasons Parkway Run & Walk benefitting pediatric cancer research and survivorship programs at The Children’s Hospital of Philadelphia.Our team is aiming to sign up over 100 participants and raise $10,000.If you can't be at the walk, it's easy to make a contribution instead. Click on the link below to get to the site: http://giving.chop.edu/site/PageNavigator/Events/Parkway_Run/parkway_run_index.html Make sure you search for Team Naya, or Naya when you go to the site to register or donate. Thank you!

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.

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.  

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 !!!!!!!