Back In the Saddle Again

I'm back in the saddle again
I'm back
I'm back in the saddle again
I'm back 

Ridin' high 
Ridin' high 
Ridin' high already

 

Seeking the Perfect Headline - Clear, perfect...relieved

This post is a call out to all of you, our friends, who make a living  putting together just the right words and images to capture our emotions, minds and imaginations at any given moment. We work with some of the world's greatest creatives, and now we're seeking your help. How do you describe the feeling of elation when you hear words like "perfect" and "clear" when your 10-year old daughter has been  battling cancer all year?  Naya's spine MRI came back with those results today.  Followed by a good brain MRI, we couldn't be happier and more relieved.  If you get inspired, send your ideas along. We still have a long road ahead, but we're off to a hell of a great start, and it's about time we heard those words.

I know the past 10 months are part of Naya's story and they will shape her future. And, along the way, I have learned so much about myself and the strength of my amazing little girl.  But it's time to look forward to the New Year and toasting a clear set of MRIs.

Happy New Year to all of you who have followed our journey this year. You inspired us to keep going, kept us believing and many times just made us smile. Thank you.  To your health, joy and success in 2014.  Stay with us, and keep us in your thoughts, prayers and minds.

Groovin - Like What We Are Hearing

We like what Dr. Fisher was laying down last night when he called us with the results of Naya's brain MRI! It sounds a little less dramatic than Axel Rose in his Paradise City overture but it was music to our ears.

Her MRI showed no change which is exactly what we wanted to hear. So no abnormal cell growth. Absolutely what 10 months of grueling treatment, over 80 nights in the hospital, eating through a tube, warding off infection, and generally feeling nauseous all the time was in service of achieving. So while Axel may have a tad more theatrical drama we couldn't be more excited.

All Blinged Out

Check out the bling on Naya's phone! She loves her bling. We are waiting to go into the MRI for a brain scan just chillin and chatting. Happy Holidays everyone.

Peach Fuzz

Now that we are done with treatments we fully expect this peach fuzz to turn back into those beautiful locks. Counts are bouncing back up, we are scheduling the post treatment MRI's, and the port removal. Soon we hope to have all these types of details fading into the past and look forward to SCUBA certification, skiing, and of course, lots of PaintJack riding!

Hang Time

We had a great Thanksgiving. Lots of friends, the very cool and hip Virbitsky's sans the patriarch who ate too much the day before and couldn't make it out of the house, family - Aunt Donna Uncle Jeff, Aunt Dana Uncle Tushar Grandma Taru and cousins Eli and Olivia. Naya cooked up a storm. Made the stuffing with me plus prepped the turkey and duck and peeled the potatoes. Then she made apple turnovers for her brother Zak with her mom as a final treat for the feast.

Now we are in the clinic waiting to see if we will be admitted today which is highly likely. So now we will be hanging in the hospital over the weekend for the 6th and final treatment in this process. We are powering through it because we can see the light at then end of this here tunnel!

Alrighty, let cycle 6 begin! We are admitted and ready to power through the next couple of days. Here are the entering count board.

What Are You Thankful For?

How do you say thank you to hundreds of people?  That's been our challenge for months.  We have cartons of cards that were sent by all of you, a list of who gave what gift, over 500 people that gave to the Parkway Run, and the names of dozens of nurses and doctors that have helped us along the way.  Someday, we will get thank you notes out, but for now, we hope you know that we are incredibly grateful to all of you. Thanksgiving has always been special to us.  It's a holiday full of warmth surrounded by family, great food and just enough family drama to keep it real.  It wasn't until last week that I let myself think it could be a "normal" Thanksgiving in the Summy household. And, here we are  doing the normal Thanksgiving stuff...getting our shopping list together, inviting friends and family over, preparing dishes, and surfing the web for good Black Friday deals.

There is no way to describe how special this year's Thanksgiving is to our family.  So, maybe a list is appropriate.  This list is from Naya and me as we sit here pondering the plan for the day:

Naya is thankful for...

• CHOP
• CHOP doctors and nurses
• the treatment working
• Gabby and Dukie (our dogs)
• being "almost done" with treatment
• PaintJack (our horse)
• All of her friends

I am thankful for...

• My family
• Hank's family
• The world class support, talent and conviction from Naya's team at CHOP
• Naya's AIS teachers and faculty
• Naya's friends and their wonderful families
• Zak's friends, family and support from his school (Haverford)
• The caregivers who have stayed with our family (old and recent).  In particular, we want to thank Karolina and Anna for their love.  And, of course, thank you to Claudia, Lidia, Joy, Maki, Katarina, Vanessa
• All of our amazing friends and their supportive messages/texts/emails/calls/cards/help
• Everybody that supported the Parkway Run & Walk
• Everyone that prayed, sent positive energy, cards and love to our family
• Our generous and understanding colleagues from McCann Worldgroup and TE
• And, finally, my family's health

We hope you have a lot to be thankful for, and enjoy a wonderful holiday season.

Love from the Summy's - Naya, Zak, Hank, Amy, Duke, Gabby and PaintJack

'Neigh' to Our New Family Member

Many of you know PaintJack.  He's the horse that has helped Naya get through this year. We always look forward to our visits with him, and he has become a bit of a celebrity guest on Naya's blog. Recently, his previous owner and friend of the family, decided it was time to let a new owner have PJ. We were lucky enough to get the call and opportunity, which of course we jumped on. Naya just didn't want to have PJ go to another owner.  We were thinking about getting Naya a horse for her birthday, but decided to jump in feet first. Things happen for a reason, and I believe PJ is here to help Naya heal and move forward. 

While Naya can't ride him for a few weeks, soon enough she can get back on and enjoy him.  In the meantime, there's plenty of stuff to do at the barn, and she'll be over there whenever she can to feed him carrots, groom him and take him for a nice walk.

Busy social life at CHOP

Naya's counts are in great shape. She is just waiting to get the full antibiotic treatments and then we are back home on Tuesday. She is outside of her room a lot more these days doing crafts, joining us for dinner in the cafeteria and just getting more walking in. Her nurses keep wondering where we have gone. She does have lower hemoglobin counts so she gets winded but she still isn't content with lying in bed.

Today she had several visitors. Her cousins, grandmother and uncle hung out with us, and Logan came to see is with her mom. Naya misses her friends and it was so awesome to see Logan.

Tomorrow is more of the same. Hopefully we get some homework in and reading done.

The Martians Are Coming!

Her is Naya in her regular audiology test she must take before each chemo cycle. For some reason this time she looked much more goofy with the way the audiologist attached the earplugs for the test. She is a trooper; her hemoglobin level is low today but she still walked the whole way over to the other side of the hospital for the test. Of course you all know this but hemoglobin transports oxygen in the blood to the muscles and when you have less hemoglobin in your blood your muscles fatigue much, much quicker.

Mixed bag

We got some unwelcome news today. Even if Naya's counts get to threshold levels, we are destined to stay here probably through Tuesday or Wednesday of next week. One of the infections she has got into her bloodstream - exactly what we were concerned would happen and what led to pulling the Gtube in the first place. It's dangerous and they don't screw around with these types of infections. So, we are here until she completes the antibiotic regimen. In the meantime, she is feeling much better and has now reached the boredom state. Her doctor and I are encouraging math. She isn't yet there! She is making a loom bracelet now and we are getting ready to send Karolina off to Poland 😭 tonight by having a send off at CHOP.

Yes - Karolina is leaving tomorrow. We will post our thoughts tomorrow but needless to say we are heartbroken. She is family to us and a sister to Naya. She helped us get through the most traumatic time of our life. How do you thank someone for that?

Today, Naya got a visit from Elmo. No matter how old you are, Elmo always makes you smile. Much needed today after getting bad news and having to say bye to Karolina.

Nadir - Right On Schedule

As you can see by our very sophisticated in room tracking system, Naya is rebounding and heading towards discharge. The key number to watch is the ANC ratio. Two days at zero and today showing the tell tale slight increase as her body starts to produce white blood cells. After we reach 200 we are out of here which hopefully will be tomorrow. 4 to >200 is a big jump but usually how her system works so hopefully she continues her normative behavior and we can make like a tree and leave!

Halloween - a tale of two nights

We thought Naya would make it to Halloween since her counts were in decent shape earlier in the week. As you can see from the photos, she was pretty strong as she celebrated Karolina's birthday and her new 5S on Monday and Tuesday. Unfortunately, Naya was feeling lousy all day yesterday. We just new something was brewing. When her counts bottom out, we end up at the hospital. Last night, she dressed up as a zombie (pic didn't turn out so great) and headed out. Within a few minutes we headed back home. Eventually we ended up in the ER and were up all night.

She is on meds to fight off what is likely a minor bug for all of us but can be major for her. She is resting and feeling better. We are probably here 4-5 days the.n back home.

Hopefully we can use the time to get through some math and reading once she regains her energy.

One more round, one more round.

Working at the Car Wash

Well not actually working, more like hanging and enjoying feeling good just two days after the 5th cycle of chemo. Only one more cycle to go and then hopefully we don't ever have to go through another treatment. You know, I don't know what the process is movingPast the 6th cycle. I better get on finding that out so I can share the process with you all.

Great nurses and Round 5

Round 5 of 6 began yesterday. Things are going smoothly and Naya is taking things in stride. Each time we come here the routine is pretty much the same. After her initial large chemo dose, we are in the room for about 24 hrs until Naya is allowed to leave the room. We are basically online all day chewing up bandwidth on CHOP's network. While I work, Naya plays games, watches TV and listens to music on her iPad mini. That device has been a sanity saver! We just got back from a walk to the gift shop (options are sparse here) and are just hanging out. Tomorrow she gets another chemo treatment and we are then released in the early afternoon.

She is keeping up with her schoolwork and looking forward to Halloween next week. She isn't disclosing her costume until next week, so you will have to wait and see.

Here is a picture from a few minutes ago. Her face looks full due to the fluids she gets during treatment and her weight gain. She is within 5 lbs of her weight in February which is helping her energy a great deal.

The other picture is with two of our lovely and favorite nurse practitioners who are on Team Naya and happened to wear the same shirt earlier this week. We wanted to give Connie and Rosanna a shout out for everything they have done to help us and Naya. Thank you!!

Lucky horse

Naya has been a busy girl since the walk. As you know, she was admitted the day after for an infection and had her Gtube removed. After getting released from the hospital about 10 days ago, she has been healing quickly, studying math and English, and visiting the barn among other things. We are likely to go into round 5 this week if her counts are high enough. Here are some new pics to enjoy!

Bounced Back Big Time

We where discharged Saturday thanks to nurse practitioner Cindy, Dr's. Phillips, and Fisher advocacy with the infectious disease team. So her counts have bounced right back and she is feeling strong. Now of course since she is doing well I decided to have surgery. Here is my newly fixed knee.

Grinding Through The Post Chemo Blahs

We are still having fun and keeping a positive outlook. Naya had her G-Tube removed which is closing and heeling nicely but that means she is back on the NG-Tube which is a bummer. The doctors thought the infection that always ensured after her treatments was not worth the benefit of not having to place an NG-Tube every time she was nauseous. We are still having fun though. Take a look.

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.

Inspiring Day at the Parkway Run/Walk

Wow, yesterday was just an awesome day!  The day couldn't have been more perfect...sunny and crisp but not too cold.  Philadelphia was at its best.  We started bright and early to set up the tent and make sure our team was equipped with TEAM NAYA shirts, tattoos, donuts and buttons.  Then, our friends and family came in by the dozens.  By 8:15, our tent had hundreds of people who came to support Naya, our family, and pediatric cancer research.  It was a terrific sight.

Once the tent craziness subsided, Naya was honored on stage for leading the top fundraising team.  TEAM NAYA team raised over $56,000, and CHOP raised over $1 million for cancer research - a record for the event.  

Naya held up pretty well.  Her counts were and are very low but the Four Seasons made it easier on her by loaning her a golf cart to join the runners and walkers.  She and Hank finished the race in 50 minutes, and all of it with a smile.

We have dozens of pictures to post.  If you have pictures, send them to me at ashah1@me.com.  I'll include them in a photo album which we'll post sometime in the next week.

I want to thank all of you for coming.  Some of you traveled across the country to show your support.  Many got up at 3 a.m. to drive to the event.  I finally had a chance to see some of my closest friends.  The love and energy everyone brought to the day could be seen, felt and heard by 9,000+ people that came to the event.

Special thanks to Team Alliquippa, The Haverford School and The Agnes Irwin School (AIS).  Your support meant the world to Zak and Naya. AIS faculty, friends and families joined in full force with at least 75 walkers and runners.  We were in awe of the AIS faculty and students who showed their support even though many had never met Naya.  

Yesterday, we made strides towards beating Naya's disease.  We've just begun.  Let's band together to kick this disease.