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:

Naya and nails

Many of you know Naya loves a good manicure. In fact, so many people sent gifts of nail polish that Naya decided to have a nail party before her radiation treatments yesterday. She had so much fun with the nurses, and especially loved the fact that some Of the guys were up for a good polish. Naya is sporting a nice pink and purple polish combination. Her friend Charles looked great in purple with sparkles. At one point, she was chasing the anesthesiologist to honor his promise to polish his nails. Dr. Joe skirted us this time but we will get to him! Today she is back in treatment. Things are going ok but the week gets harder each day due to the cumulative effects of her radiation. She is positive and a typical kid addicted to her iPad watching TV shows.

Later this week we will post new additions to the no hair club. We have a few to add!

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.

Lame Dad

Of course; I pulled up lame yesterday with a pinched nerve so Naya had to take care of dear old dad. Trust me, there was a new sense of right and wrong, up and down. Now I understand a little more acutely what Naya has been enduring. My right hand is numb and I can barely drive but somehow she powers through so much more every single day and she is 9! I'm in awe, oh yea, and also in love! I told you that I would post the new looks of everybody that was shaving their hair in honor of Naya. Her is Ron, one of my best friends, sporting his new look.

Thanks Ron.

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.

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Downs and Ups

The end of the week proved to be tough for Naya. She had major throat pain - an effect from the radiation and, a fever by the early evening. The throat pain was so severe that water was not going down. The fever is taken seriously as her white cell counts are low. While the fever landed us back at CHOP overnight for tests and observation, she is much better.

She showed her courage again last night as she took medicines even as her throat was causing excruciating pain. She knew it was up to her to help herself, and she did just that. The medicines have helped a lot and she is now able to eat and drink.

She doesn't have a fever but we won't be released until we know she doesn't have an infection - which hopefully will by early evening.

They say this is normal stuff during treatment so no need to be alarmed. Easier said vs. when you are the one going through it.

The most important end to the last 12 hours is that Naya is feeling well, in very good spirits and liking herself without hair! Thank goodness she is a strong cookie!

Hair Part Due

Today was the day Naya's hair reached a point where her hair was just too far gone to keep it around any longer so we decided to take action.  Here is Zak and Dad, pre - during - and post removal.  Stay tuned for a new picture of Naya once we wake up from general anesthesia. Zak and Dad pre-proceedure;

Zak During Video;

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Zak and Dad all freshly groomed;

Hair

We knew it would happen and it is certainly happening quickly now. Naya is loosing her hair so all of you supporters out there, Jem and Jeff you don't count, can start looking Into the local barber shop nearest you where you can get those locks shaved off. I'll post pics of Zak and me this weekend with our new, soon to be standard, looks.

Unexpected surprises made for a good day

The day started out great. A dear friend of ours who has known Naya since birth made a surprise visit while Naya was getting treatments. Rob's visit brightened Naya's day and mine! And - the proton machine was fixed in time for Naya's radiation treatment which was welcome news as it causes fewer side effects in the long run.

Naya also went to another movie last night - again without parents- and had a blast with her cousin Olivia and Anna and Karolina.

All in all a good day.

The Deal

Both Naya and Zak start everyday, and have for years, by reciting The Deal and it goes like this; "Anything worth doing is worth doing really well.  Give it 100% and don't leave anything in the tank.  Have fun!  And the most important thing is; that I love you."

It's never been more important than now for her to keep The Deal top of mind.

Below is a great piece of art one of my McCANN colleagues daughter drew for Naya this morning.

The Joy of The Movies

Naya went to the movies last night in her first night out without mom or dad since her surgery back on February 20th. She came home absolutely beaming. She was dancing and laughing and feeling great. The movies might just be the best medicine she has takin for over a month. Of course, it was most likely getting out and having fun on her own, feeling independent and not having two parents hovering over her asking her how she felt every two minutes but hey, if the movies work like that they may have to become part of her regular treatments. I'm cool with that.

Though she be but little, she is fierce!

One of the gifts we received was this great quote from Shakespeare...

Though she be but little, she is fierce!

The quote is prominently displayed in our kitchen, reminding us of how strong Naya is every day including yesterday.

Yesterday, she and I went to get her haircut.  I was more anxious than she was as she hasn’t had short hair since she was a baby.  She enjoyed every second and even feels it is a better length for her than the long hair.  I also heard from a couple of her classmates, and they said they were also cutting their hair in Naya’s honor.  Before you know it, Naya’s class will all have cute bobs!

I want to thank Joseph Anthony salon for creating a safe environment for Naya to get her haircut as Naya’s cell counts are down right now.

Today started off rocky with eating, but seems to be improving.  She dead set on going to the movies, even if she has to wear a mask, so we’re going to try and make that possible.   

Dr. Hank

Naya had a good day Friday, no headaches, eating pizza right after radiation, then shrimp and pasta for dinner. We received new care packages from McCANN, TE Connectivity, Anthony Yell, the New Biz Team at McCANN and lots more. Thank you everyone for your support and kindness. Most of the goodies where yummy things to eat so just what she needed from a calorie perspective. Today I had to learn how to administer subcutaneous injections so I could give Naya her medicine to boost white blood cell production. She wasn't sure about her dad playing doctor but I put the numbing creme on and she had to admit she couldn't feel a thing. She did have a healthy dose of fear before my first stick though but hopefully she is now confident in me.

She is eating and feeling as good as she has in a while. Needs to drink more so when you see her tell her to pound some fluids.

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.

Inspiration

There are wonderful nurses at CHOP.  One of our favorites gave Naya this poem and said it reminded her of Naya.  I loved it and wanted to share it with you...

The Oak Tree

by Johnny Ray Ryder Jr.

 

A mighty wind blew night and day.

It stole the Oak Tree's leaves away.

Then snapped its boughs

and pulled its bark

until the Oak was tired and stark.

 

But still the Oak Tree held its ground

while other trees fell all around.

The weary wind gave up and spoke,

"How can you still be standing Oak?"

 

The Oak Tree said, I know that you

can break each branch of mine in two,

carry every leaf away,

shake my limbs and make me sway.

 

But I have roots stretched in the earth,

growing stronger since my birth.

You'll never touch them, for you see

they are the deepest part of me.

 

Until today, I wasn't sure

of just how much I could endure.

But now I've found with thanks to you,

I'm stronger than I ever knew.

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!

The start of a new week

I was dreading Monday as I knew it was the start of a brutally long and tumultuous week for Naya. After the annoying port access, things went well. Naya's treatments went smoothly and she experienced no headaches, itchiness and didn't throw up (thank goodness). She received a bunch of things to keep her busy during treatments including a new journal, gel pens and new beads for her beads of courage necklace. She had more of an appetite after treatment than she did last week. Today we are back at it. She will also get a blood transfusion today as her hemoglobin counts are low due to the treatments. Hopefully that will help Naya's energy level and she be chatty and hungry tonight.

A New Week

Day 4 of the 33 day radiation/chemo initial treatment phase. Everyone in the household off in different directions. Naya and Amy off to CHOP for a full day of treatment, Zak off to school then baseball practice, and I'm in NYC after a tender goodbye with Naya. Getting back and finding our new normal is important for us all. My hope is that everyone has a great day and tonight we synch up and share the day's interesting events.

Good Sunday

Naya had a really good day.  She was up and about in the house most of the day watching TV, hanging with her Aunt and Uncle, seeing a friend and now just chilling.  She ate and drank all day which helped her energy level.  There were many moments today to talk about but I'll share two...

She put on a necklace today given by her Aunt Donna, and cried.  I asked her why she was crying, and she was just happy that her Aunt loved her so much.  She and her Aunt have a special bond, and it was so good for Naya to spend time with Donna.  Thank you Donna and Jeff for loving our kids like your own!

The second was when we told her that the chemo would cause her hair to fall out temporarily. She took the news like a champ, and basically said if it was going to help kill the cancer, she didn't really care.  Our guess is that she will, but we know that she's focused exactly on the right mission, and won't let anything get in her way!  Go Naya!!