The RiderGirl blog is dedicated to sharing stories about childhood cancer.
Naya starts her third round of treatments, out of 8, today but before she begins she went out to see all of her friends at Aliquippa Stables. So PaintJack, Scout, Camanche, and the rest of the gang. As always, she came back full of energy, giving me all the updates on all her horse friends and the late breaking events around the barn. She loves her horse buds but I'm going broke with all the carrot bribes!
Naya rocked out last Thursday with Pat and Neil, yes Pat Benatar and Neil Giraldo. We had a blast and man can Pat still belt it out and of course Neil can make that guitar scream. We had a great experience backstage and Naya partied hard late into the evening. Check out her leather dress with chain link neckline!
We have less than 50 days to raise funds and sign up walkers! You can support CHOP and Naya by either walking with Zak and Naya, or donating to her team. Go to our team website TEAMNAYA and click on the Donate or Join buttons on the left side of the team page, and follow the directions. Your gift is tax deductible and greatly appreciated. Together we can make a difference for Naya and the lives of kids who have been affected by cancer.
Naya was invited to watch the Phillies practice, and meet Cliff Lee. She had a great day, and so did Zak. Thanks to Cliff Lee and CHOP for sharing such a great experience with Naya.
Summertime with good friends, cousins Olivia and Eli and of course Gabby. Naya is feeling great and enjoying the dog days of summer. Take a look.
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
Here is one of my favorite pics of Naya hanging onto her brother in Central Park in the spring last year. It's just so expressive I wanted to share. Naya has been in the hospital since Saturday now with an infection, pseudomonas, and zero ANC, Absolute Neutrophil Count, counts which means we will be there a while longer. She needs a count of 200 to be eligible for discharge. Your ANC count is 4,000 - 7,000 by the way.
Her spirits are good and she feels okay she just can't fight the infection with zero immunity.
With all that, I got the best birthday gift a 51 year old dad could ask for this morning around 6:15. I woke up in the bench/bed beside Naya, got up, jumped in the shower and when I got out, she looked up and said good morning dad, happy birthday!
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?!
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We are ready to blow this joint. We are out of here! We are going to make like a tree and leave. Naya and I are discharged and Homeward Bound. Simon and Garfunkle would be proud of here.
We are officially cleared to begin cycle two of maintenance chemotherapy! Only six more to go :-| Naya is resolute, dug in and ready to get it on. Take a look at her sitting with me in the triage waiting room waiting for a room and the chemo. Such a great attitude! Marvin Gaye would certainly give props.
Who says hanging out running errands like a visit to the local FarmersMarket to pick up fresh corn, heirloom tomatoes, fresh berries and local veggies isn't a lot of fun when it's with the bravest person you know that also just happens to be your daughter?
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.
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.
Stevie Wonder definitely had Naya in mind when he penned this hit as well as his own newborn. Look how beautiful she is even when about to go into surgery! She is having a G tune installed into her stomach through her navel so she doesn't have to insert the NG tube through her nose after she is nauseous.
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 :)
The "No Hair Club" isn't for humans only. Horses are more than welcomed and even encouraged. Here is Naya's best friend at Alliquippa Stables, www.alliquippastables.com, PaintJack, having his entire body shaved in support of Naya. Now that is support! I don't see any of you humans out there getting a total body shave. Alliquippa is putting together a team to support Naya's Four Season River Parkway run. Way to go Katie and Miss TJ! Anyone else want to put together a team and join Team Naya's efforts to fight cancer please go to, http://giving.chop.edu/site/TR/Events/ParkwayRun?team_id=12770&pg=team&fr_id=1500 and sign up and help us out. CHOP has put together a great event and we greatly appreciate the support and thank you.
Naya had to go back into the hospital yesterday because she had a fever spike and protocol when your neutropenic is that you don't waste any time, you get into the hospital, and onto broad spectrum antibiotics which we, of course, did. Yesterday, she spent the day receiving fluids, antibiotics, and having her blood drawn to see if there is an infection causing the fever. The blood cultures take 24 - 48 hours to determine if there is something that is going to grow to figure out the exact antibiotic to use to fight the infection. Hopefully nothing grows and she can be released tomorrow, Wednesday. Her ANC is 84. We like it over 1,000 so that is most likely the reason for the fever but we have to be careful because of how low her white blood cell counts are could allow an infection to run rampant through her body.
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.
I'm sure The Rascals wouldn't be happy with my liberal interpretation but Naya is just chilling with the windows down soaking in the summer sun and beautiful weather here.
Last Thursday Naya entered into the next, and hopefully last, phase of her treatment plan. She has eight, six week chemotherapy treatments ahead of her. Each six week cycle starts with a hospital admission for 3 - 5 days where she is administered the bulk of the chemotherapy drugs for the entire six week cycle. After the hospital admission portion she then goes in each week for blood analysis and another dose of chemotherapy, vincrystine specifically. So the beginning of each cycle is the hardest on her and the remainder of the cycle gets progressively less invasive.
She is doing great so far on her first cycle. She was in the hospital from Thursday to Saturday last week, right on schedule. It did rock her pretty hard from a nausea perspective and we had to go back to the clinic on Monday to get fluids and steroids to help turn the corner so she could keep food and fluids down. This did cause her to go back on the NG tube to relieve the stress of trying to eat and get her required calories when she just doesn't feel like eating. We are getting back in the groove though. This morning she work up hungry and wanted to try pancakes. A great sign.
