The RiderGirl blog is dedicated to sharing stories about childhood cancer.
Naya's been on a shoe kick lately. Here she is in Vail with custom-made boots. They even let her brand her initials on the floor of the store because we've been VERY GOOD customers :) She also went to school yesterday with bright pink laces to contrast with her lovely purple Nike shoes.
Naya once again showed us how to tackle fear, live life, and get out there and "just do it!" We have been in vail all week. Mother nature cooperated magnificently providing seven inches of fresh snow on the day of our arrival, then over the last two days another eighteen inches of fluffy powder. Of course, during the first few days Naya was adjusting to the altitude so she was more focused on keeping hydrated and topped off with calories but as you can see above she was determined to get out on the mountain and tear it up with her brother.
We all started off on chair lift number 1, not the gondola because that would be too easy and not our normal routine so she donned her skis at the base of the mountain, skied right over to the quad lift, got scanned by the Vail folks, hopped on the lift, jumped right off at the top of the hill and skied down to the next lift, Avanti Express. From there we went up to the top of the mountain, down the other side, up to Wildwood Lodge for a hot chocolate. While we where taking in the sites from 11,000+ feet her nausea got the best of her and she did get sick but as you all know that wouldn't stop Naya. She went into the bathroom with her mom, took care of business, came out and then skied down Avanti, a blue run with a black diamond section in the middle. The snow was deep, some places over a couple of feet, she kept her goal in site and made it down the run. Then hopped on the lift, back up to the top of the mountain and then down to Eagle's Nest gondola for a casual, amazing vista, ride down to grab lunch and chill.
Reflection? Twelve months ago she was in the hospital recovering from two brain surgeries, receiving radiation therapy and chemotherapy, and, as only my 10 year old daughter can, showed me how to conquer fear and "just do it!" She is AMAZING!
Last night we lost grandma Taru. She passed in her home where she was most comfortable and a vital member of her community. Her friends and relatives describe her as strong, loving, proud, opinionated, smiling and always a pleasure to be around. They will miss her, and so will we.
She will certainly be missed but not ever far from our thoughts. She gave so much support to Naya through her treatments, plus her other grandchildren - she had four - and was always there to help us and them. She used to do anything to help, from watching Naya, making great Indian food in a pinch, watering our plants, cleaning up, and taking care of the kids. She was a real salt of the earth.
We will miss you grandma. We will remember all the fun things you did with us, your smile and your generous heart. Thank you so much for all you have done to help Naya. We love you!
Naya's been making progress every day transitioning back to school, getting into a more regular eating routine and enjoying some of her favorite activities including shopping for jewelry, perfume, dresses and horseback riding. She is going to school almost every day for 2-3 classes, keeping up with math homework and about 450 calories away from being off of her feeding tube.
Starbucks hot chocolates, with whip of course, have been a staple. We've become experts on the calorie counts in tall and grande sizes, with whip, syrup, and milk. Thank goodness for Starbucks!!
Here is Naya studying fractions, completing her math assignment and giving herself the calories she needs to become independent. Her nausea has improved too. We're hoping things continue as we get ready to go to Vail this month and enjoy time together as a unit, reflect on the year, and hopefully enjoy Vail. For our friends in Denver, we'll send out an email to see if we can get together and see all of your lovely faces :)
A year ago today, Naya was admitted to the ER with what we thought was a stubborn infection. As you know that day changed our lives and the lives of many people around us. I thought I'd take a few moments and share some reflections (and cliches) from the past year:
I'm sure there's so much more, but that's it for now. To our friends and family, thank you for being with us an entire year.
Since I saw your eyebrows adorn your face. Okay, not nearly as good as Aaron Lewis penned but still a beautiful sight to see. What a great tune! Hair is coming in, eyebrows are getting thick and we are working on longer school days and more food not through a tube. All good things for sure and Gabby and Duke seam to like it.
Just like the best friend he has been for 8 years, Murphy went into surgery with Naya and I'm happy to report he pulled through and even comforted Naya through the journey. Naya came out of surgery and is feeling strong and happy to have that port out of her.
It dawned on me that it may not have been apparent that Murphy's boo boo matches Naya's which is located under her right shoulder just like Murphy's. The docs at CHOP operated on him and made him all better.
Here we go! Let's get this dang I.V. Port out of my chest and the catheter out of my heart. Hanging around waiting for anesthesiology to come in always seams like it takes forever especially when you can't eat and drink and haven't do so since the night before. The procedure will take 1 - 1.5 hours then we will warm up in post op and head home to get some food and water going.
Naya is getting stronger and feeling better every day. She is back riding and in school for at least a class per day. Her best friend PaintJack and her are getting re-acquainted. He is such a good boy it's like, well riding a horse! Oh yea, PaintJack came in second in a dressage competition today. Way to go big guy!
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Ridin' high
Ridin' high
Ridin' high already
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.
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.
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.
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!
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.
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...
I am thankful for...
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
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.
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.
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.
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.
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