The RiderGirl blog is dedicated to sharing stories about childhood cancer.
So the day started with a very sharp pain in my shoulder, and that lead to a numb feeling from that shoulder down to the lower part of my elbow. So my dad gave me morphine for my pain,and the numbness went away after 30-45 minutes. So I relaxed on the couch for a bit ,and then Zak, dad, and I headed to the hospital. 5 minutes till my table time.
It has been very hard going through chemo and radiation. so I am proud to say that after tuesday this week I will get a 6 week break from both. During that break I will visit my Aunt Donna, go to school,play golf,visit the horses,play with my dogs,and swim in my pool!!!! I'm sooooo happy!!!!!!!!!!!!!!!
Naya went to her barn today for the first time in several weeks. TJ and Katie got Naya's favorite friend PaintJack ready to hang with the crowd. We visited for about an hour, and loved every second of the visit. Naya gave out some carrots and treats, and then got ready for another few holes on the golf cart with Dad and Zak. Needless to say, she was tired after so much activity and we're now chillin out.
Tuesday is her last day of radiation and last day of her first round of chemo. She will get six weeks off and then we move to the next round of treatment. On her break, she'll probably begin to get some classroom time in at AIS, build her strength back and swim a lot in the pool. And, of course, visit her friends at Alliquippa.
Thanks TJ and Katie for a wonderful day!
For anyone that knows Zak, you know he is kind and a great kid. He has a big heart and is a terrific brother. Zak is Naya's wingman and loves her dearly. The sweetest times are when they are together as you see here.
We are trying to figure out the plan for eating and drinking, and boy is it a puzzle. Wednesday was a good day with the feeding tube, Thursday was essentially a disaster with nothing going down, and then Friday presented a new plan. The new plan is to give food through the tube more slowly. Hank then had a brilliant idea to give water through the tube too to help Naya get hydrated. Things have worked well so far, and gave Naya energy she hasn't had in a while.
With her newfound energy, she and I went to the pet store to buy Gabby toys for her "birthday", followed by a trip to the grocery store. I haven't been to a store since mid-February so I ended up buying way more than we needed and anything Naya wanted.
While there, Naya really wanted some noodles so I bought them for her even though I felt she wouldn't eat them. I was wrong. She is now eating spicy chicken noodles and watching golf on TV. I'm just hoping the noodles stay down, but I applaud her for trying even though they may not cooperate with her stomach.
Another lesson in her courage happened today. While at the store, Naya noticed a couple of kids and their dad staring at her. I was worried that she would feel bad, but instead she pointed out how rude they were, especially the father. Go Naya! It is great that she understands that some people just have no idea how to behave when people different are around them. As her mom, I want to protect her from ignorance. Today, I learned she doesn't need me to defend her - she's comfortable in her own skin.
It has been a long but good few days. Naya's friend Paige came to visit - which made Naya very happy of course. Then she got a new manicure from her Aunt Eden, Aunt Donna and uncle Jeff. Naya is now sporting neon orange. Monday was her last day under anesthesia. The nurses decorated her room in honor of her achievement. And Naya painted the nails of two of her docs. Yes - Dr. Joe finally caved and had two nails polished. More surprising was when Naya asked her prestigious radiologist if he wanted a nail painted. He gladly took her up on the offer and ended up with a nice blue thumbnail.
Her counts are great and her feeding tube is going well. She even let me put the tube in today.
All of this good news led to getting released and we are going home after radiation. What a week she has endured. We are so proud of her.
Today is her first radiation treatment without anesthesia. She is feeling strong and ready. More to come tomorrow.
Naya had another good day and good news on several fronts. Her white cell counts are terrific, all of the cultures on her fluids including the spinal fluid came back negative and she is beginning to tolerate the food from her feeding tube. This has all meant her energy is good, she is in a good mood and her skin is improving. Yesterday, she had a full day of visits topped off by a visit with her cousin Olivia. They just hung out doing a craft and watching modern family. Nothing beats kids just being kids. When I asked Naya how her day went, she truly felt it was a good one.
Naya also has a healthy outlook on being in the hospital. She thinks of it as a home away from home and understands it's purpose is to keep her healthy through treatments. The CHOP docs and nurses deserve all of the credit.
Finally - Naya is forming a team to walk for cancer research. She will be asking all of you to join her in September. They asked Naya if she and zak want to be ambassadors for the walk and it looks like Naya is going to do it. She is making it very clear she will support pediatric cancer research for not only herself but all of the other kids with cancer.
The fever and low blood pressure from Monday night indicated an infection, and that led to postponing chemo and radiation for the last two days until the reason was found. So far, they haven't found anything significant, so that's the good news after several blood tests and a lumbar puncture. She has a staff infection, but it's not clear if that is the underlying cause. Antibiotics are helping to fight her staff infection as well as other infections that may be lurking. The bad news is Naya's body is definitely fighting something off, and her white cell count is basically non existent. All of this means that we're in the hospital for a while until she is in the clear on her cell count.
If that's not enough, her shunt might need a revision. She's not exhibiting symptoms of an issue, but it looks like it's not mechanically working as well as it should be. Nothing will be done until her white cell counts go back up so we'll just wait. If she needs a revision, it should be pretty straight forward and a fast procedure according to the docs.
Naya is holding up well considering all of this. She doesn't seem too phased by it, and is hoping to see the Battle of the Bands tonight at CHOP. She continues to smile and chat up people when she wants.
Today she did get back into radiation, but no chemo given the cell counts. Hopefully tomorrow will be both, but at least radiation. She also gets a feeding tube today to help build back her nutrients and strength. She and we are very relieved about the feeding tube as we think it'll take the pressure off of her to eat, and restart her appetite and give her more strength.
Let's hope she can make the Battle of the Bands tonight as she is really looking forward to it....and that her white cells start climbing up. And, of course, that radiation is back on tomorrow.
Today Naya was honored at the local little league opening day ceremonies. She didn't attend because she wasn't feeling up to it, but she appreciated the gesture and MLL jacket. Zak got to throw the opening pitch which was a great honor for our family. Thank you MEDIA for supporting our Zak and Naya today. Once Naya got some energy, we made a trip to Benari to see Bobby and Rachel and thank them for their support. It was great to see Bobby and for Naya to get and about. After running a few more typical Saturday errands, Naya was exhausted and we made our way home.
She has had a decent day. Her appetite is still a challenge as she usually doesn't get to eat until 5 pm daily. Thank goodness that scenario ends this week and anesthesia ends soon.
Her uncle and cousin joined the No Hair Club today in her honor. I think at least 15 people have cut much or all of their hair to support her. Thank you!!
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!
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.
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!
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;
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.
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.
One of the gifts we received was this great quote from Shakespeare...
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. 
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...
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.
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!!
Today has been good so far. Syd and her mom came over to say hi. Naya was so excited to see Syd and loved the duct tape! Also, Naya's wonderful teacher stopped by to drop off some coveted AIS gifts which Naya absolutely loved. Thank you for cheering her up AIS girls. You rock!
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