Let the Season Begin

We broke out the golf clubs, told the golf staff the news about Naya, got her a cart and everyone went out for nine holes on Sunday. Mom froze, Zak moved back to the men's tees for good, Naya drove the golf cart, and dad edged out Zak by a couple of strokes. He would have crushed me if his driver went straight or if I would have let him play from the senior gold tees.

Rich, our regular caddy, snapped this pic of us on the 9th Tee Box, which Zak pared by the way.

We had a blast and think this could become a regular occurrence for us once school is out. Naya loves driving the cart but please don't tell her doctors or I'm sure dad will be sternly reprimanded. Oh yea, it revved up her appetite also. Once we got back to the clubhouse a big golf course style organic all natural beef hotdog went down quickly.

Naya's Best Buds

Naya has been working hard eating and drinking enough fluids today and doing a great job of powering through the fact she isn't hungry or thirsty. Her teacher, Mrs. Beifeld, came to visit and so did her aunt and uncle. It was great to visit with someone other than boring mom and dad.

Her are her best buds out in the yard waiting for her to come out and play.

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:

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.

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.

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.

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 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.

Saturday, Not in the Park, and Certainly Not Like the 4th of July

Naya couldn't keep anything down yesterday.  Even water wouldn't stay down.  We just took it really easy and started with a tiny sip every 5 minutes and by the end of the day, after a couple of bites of a Kinder Bar, she was starting to feel better and finally was keeping the water down.  I was worried we where going to have to visit the hospital again to get fluids in her.  Phew, that didn't happen. Naya's Aunt Donna, Uncle Jeff, Uncle Tushar, cousins Eli and Olvia all stopped over, helped cheer her up and kept her spirits high while she was struggling through the day.  She was very happy to have all the support.  Last night I kept waking her up through the night to put more fluids in her and by the morning it appears she is feeling a little better and is now eating Fruit Loops.  Not necessarily the breakfast of champions, but at this stage, we will all take it.

So it was most definitely Saturday, not a walk in the park for sure, and nobody was partying like the 4th of July but as I've said many times, one day at a time.

Cuddly and Cozey

Dogs are incredible. Her Gabby knows exactly what Naya needs. Pure comfort.

Nothing Happened

Last night, nothing happened!  And that is exactly how we like it.  We slept and woke up, boring hugh?  Today is forecasted to be a very nice day here in Philly.  60 degrees.  So I think we'll head outside for a little walk with the dogs and fresh air in our lungs. Nothing is going on for the next couple of days so we have plenty of time to open all the amazing gifts you have sent to Naya over the last couple of weeks.  Literally, there are so many it is going to take that long to look through them.  Thank you for your cards filled with encouragement and the gifts which are making Naya laugh and picking up her spirits.

She is processing the concept of what lies ahead in her treatment plan as well as the seriousness of her disease which gets her down as she thinks through exactly what that means to her.  I think she will continue to process this for the next several days.  Certainly we will be here with her to make sure she keeps focused on success.

You support is even more important now for her to see so hang in there with us which I know you will.

Movin On Up - PICU to NeurOnc

Alrighty then! We are headed out of the Pediatric Intensive Care room downstairs into our lavish, private suite for a night. Then we are blowing out of here tomorrow.

A Big Day Ahead

Good morning. We start procedures today at 10:30 with radiation simulation.  We have to make a mask of her face that will look similar to a hockey goalie's mask.  The mask will be used over the next six weeks for her treatments to keep her completely still and ensure the accuracy of the treatment.  It's a long haul, 1.5 hours on her belly.

The next procedure is a spinal MRI which is 2+ hours on her back.  Can you say boring?  Neither of these procedures are painful, they are, however, long and tedious.

One other procedure is on tap for today also and it will be painful but she will be sedated.  Hopefully when she comes out she is not feeling sore or uncomfortable. So a big day to say the least.  It may sound like too much but we are working to accomplish all the preparation activities we need to get into the treatment phase as soon as possible so we can cure this thing.

Oh yea, one other bummer, no food until all this is over because of the sedation.  I better have chocolate chip cookies, pasta, and fruit all at the ready.

All Day!

Today was a great day! Naya was home all day, we didn't see any leaking, and I couldn't, neither could the neuro-oncologist, feel any pooling of CSF. Tomorrow is a huge day. We simulate the radiation treatments where they make a mold of Naya's head which will take about two hours. Then we are off to a spinal MRI, 2.25 hours, and bone marrow biopsy and fluid harvesting. Can you say ouch?

Wish us well.

Good Morning

Good morning indeed! We have NO CSF leaking and there also does not appear to be abnormal pooling or collecting of CSF under the skin implying it is draining as it should through the drain the surgeons installed 12 days ago. We will keep a close eye on her today so please keep all the positive vibes coming our way.

Night Watch

Naya just had 6 vertical mattress sutures added to her incision to attempt to stop the csf leak. Now I need everyone to send positive, no leaking vibes her way. Tomorrow am is the milestone. No leaking overnight!

Arg - Going Back to CHOP

Naya is having a great day. She woke up strong with almost no headache, we use a scale of 1-10 and it was a 1, took a shower, washed her hair, but alas her incision is still leaking ever so slightly so we must go back to CHOP. Just plain sucks because she doesn't have any nausea and her pain is very mild. She is definitely on the mend. They will see if adding another stitch or two will do the trick or if we have to have a shunt installed tomorrow. Let's all hope for a stitch.