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.
[wpvideo 5OZHO3SF]We got to Zak's hitting lesson a little early so Naya could take a few cuts and work out. Hey Naya's Oncology team! What do you think about that coordination? 3-3 and if her brother didn't get bored and through the ball to the ceiling she would have kept the streak going.
Thanks to Mike Decarlo for letting us use a cage.
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!
Well the fans where great, take a look, but the Baker team, the team that Zak plays on didn't bring their 'A' game to the park today. Zak pitched well but went 0-2. He is still leading the league in home runs though. Even though it was a tough loss, having Naya on the bench softened the sting of defeat and made my day much, much better.
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.
Naya went back to school today for her first visit since February 19th! She was beaming with excitement, didn't have any stress or trepidation. She had a blast and I could just tell she feels completely loved and safe at AIS. It is absolutely the best medicine and exactly what she needed and needs. Thank you AIS! She is excited to go back every day. It brought tears to my eyes to see her having so much fun. Take a look.
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.
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.
Supposedly it is Gabby's birthday today according to Naya. So I guess a special slow roasted bone is in order after we get home from chemo, aspiration therapy, and proton therapy. Take a look at the birthday girl with her best friend.
General anesthesia is in our rear view morrow and we are rounding the home stretch! Seven more days of proton radiation and then 4-6 weeks off from treatment.
After the break we will get a new MRI and determine treatment efficacy. That is a high drama event. You want to understand how successful treatment was but at the same time you fear you may hear we need more or other treatment measures.
Anyway you think about it, 4-6 weeks off will be great. Lots of swimming and visiting the horses.
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.
"It's getting better all the time." I'm not sure John and Paul where thinking about Naya when they penned that hit but still it applies. She finished up the week with spinal radiation only on Friday as her brain treatments are over for a few days which gives her time to recover and gain some strength. After radiation yesterday she picked up a lot of swag from her AIS school friends in pre-k, k and her 4th grade classmates. She had a blast checking it all out. Take a look at her surrounded by all her cool gifts.
This morning she is reintroducing Cheerios to her system in small quantities to augment the liquid nutrition she is receiving through the feeding tube you see in the picture.
If you are wondering about her forehead peeling, that is from the cranial radiation. It's the same as a sun burn which, given her Indian genetics, she has never had so another new thing Naya has to sort through.
All in all, she is powering through the treatment and getting stronger. The resident just came in and told me her white cell count went way up since yesterday to 1437 which is great. That means her bone marrow is producing immune system necessary white blood cells used to fight off viruses and most importantly necessary to get out of the hospital and return home. No promises but if mom and dad get trained on how to use the NG feeding tube we just might blow this joint.
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.
After coming out of radiation last night and getting home we turned around and headed back to the hospital for an all nighter in the ER. Naya's temperature spiked and given her weakened immune system that means we have to get into the ER, start a full spectrum antibiotic regiment, and get a blood culture taken to see if there is any bacteria we need to specifically address. Around 5am we finally found our way to PICU where we settled in for the day. After all that if was decided we should skip chemo and radiation treatments for the day and just rest and build up our strength. Now if only we felt even the smallest bit like eating and drinking we could get a day ahead but man food and drink just doesn't look good to us, or Naya that is.
Amy is coming in tonight to take over the night shift so maybe a change of parental scenery will bring a new perspective and make tonight smoother than last. One can only hope. As we have said many times; One Day at a Time.
It's Monday and we are back in the routine but this week is a very different week. Thursday is Naya's last day of general anesthesia! So no more eating restrictions and hopefully that means an improved appetite and sense of being thirsty. Here is Naya and Ali listening to "Momma's Got a Shotgun" by Carrie Underwood. You all know Naya is a big country fan. I guess when all this is done she can get her horse and ride the range.
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.
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!!
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.
