The RiderGirl blog is dedicated to sharing stories about childhood cancer.
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!
Naya couldn't keep anything down yesterday. Even water wouldn't stay down. We just took it really easy and started with a tiny sip every 5 minutes and by the end of the day, after a couple of bites of a Kinder Bar, she was starting to feel better and finally was keeping the water down. I was worried we where going to have to visit the hospital again to get fluids in her. Phew, that didn't happen. Naya's Aunt Donna, Uncle Jeff, Uncle Tushar, cousins Eli and Olvia all stopped over, helped cheer her up and kept her spirits high while she was struggling through the day. She was very happy to have all the support. Last night I kept waking her up through the night to put more fluids in her and by the morning it appears she is feeling a little better and is now eating Fruit Loops. Not necessarily the breakfast of champions, but at this stage, we will all take it.
So it was most definitely Saturday, not a walk in the park for sure, and nobody was partying like the 4th of July but as I've said many times, one day at a time.
We made progress on the headaches, and now Naya's itchiness has subsided. Our guess is that she'll get itchy once the treatments start, but we think we found the right meds to deal with it. She slept like a baby last night too and had a long and luxurious bath! Today, she hasn't been able to keep food, water, or anything down. My hope is her stomach gets back into a groove soon so that she can at least get some liquids down today.
Her cousins and Aunt Donna and Uncle Jeff are visiting her today, and she's having a nice day with them. And, her teacher dropped off some nice things from her classmates, which we'll open up once she's got some energy in her.
Let's hope her digestive system wakes up and lets her eat or at least drink tonight.
Today was better for Naya. She came out of radiation without a headache, and got a good rest when we returned home. Now she's watching the recent Bond film with lots of interest :)
The days are tough for her as her body tries to adjust to a grueling daily schedule of chemo and radiation, plus not being able to eat after midnight. Emotionally, as you can imagine, this is very tough on her. But, she continues to move forward with strength and is doing her best.
She unfortunately is very itchy, which we're trying to get under wraps. The "good" news is it doesn't seem like an allergy to the meds/chemo. The frustrating piece is everyone is a bit perplexed by it. Hopefully, tomorrow will be nice for her, the itchiness will subside, and she'll get a chance to enjoy her gifts, read cards and visit with special people in her life.
Another day of treatment. Carboplatin, photons and two hours of general anesthesia! This time the docs kept her warm with a Bair Hugger and brought her back out of sleep slowly, pushed as much fluid as possible during the treatment, and kept the CO2 levels low. She still had a severe headache after a few minutes. So we gave her some meds and she took it easy for a couple of hours and now seams to be much better. Take a look.
We need to keep tweaking the daily regiment for sure but we have ideas to try again tomorrow. Let's hope we feel good a little longer and when the doc swings by around 6pm we can go home and do it all again tomorrow.
After her treatments yesterday, Naya suffered from painful headaches and exhaustion. We decided to take her back to CHOP and make sure it wasn't an issue with her earlier surgery. Thankfully, it wasn't due to surgery. Instead, we believe it is was the length of yesterday's treatment and anesthesia. They say the first few days are hard, but nobody can know or prepare for this. She continues to be a trouper through this process. She is sick of the hospital though and wants to he home and feeling as well as she did a couple of days ago.
I believe today will be better as all teams are on alert and working hard to make it better. Naya has more than done her part and deserves a bit of a break.
Naya got her first dose of chemo and is in her first radiation treatment right now. She has been a trouper for sure today. Here she is before the treatments began. We expect her out around 2 today and will get her something good to eat before we leave as she is starving.
Here is Naya skiing on a black diamond 4 weeks ago! We can't wait to get back out there again.
Today, Naya is in neuro-psychological baseline evaluations all day. They establish a baseline pre-treatment so we can understand the effects of the treatment and help her if needed. She was accepted into an ongoing study for her specific pathology. The study focuses on two variables and randomly assigns the participant into one of four arms of the treatment regiment. That treatment starts tomorrow. It consists of 6 weeks of radiation therapy - proton and photon, followed by eight, six week, cycles of chemo maintenance.
One day at a time and soon enough we will be heading down those slopes again.
Naya had a great visit today with her friends at Alliquippa and her favorite horses - Paintjack, Scout and Comanche. Thanks to Katie, TJ and the entire family at Alliquippa for being so loving. It was a great feeling for Naya and beautiful day to enjoy her favorite hideout.
Dogs are incredible. Her Gabby knows exactly what Naya needs. Pure comfort.
Naya got a lot done today. She and I went to the nursery and bought some bulbs to plant and an orchid for her. She watched two chick flicks, and then ate 3 freshly created Indian breads from her Grandma Taru. We also finished getting her new room together. She now has a lavender room, her own bathroom, the best view of the backyard in the house, a TV and bigger closet. All things a teenager wants...and Naya basically is one! Anna, former Aupair and her "big sister", painted Naya's nails as Naya felt her "toes looked terrible and she needs them done".
Naya also had NO HEADACHES today - something that she's suffered with for about 4 weeks.
A nice day overall for her!
This was a great shot of me and Naya I wanted to share.
Naya has two dogs. Gabby is just about 2 and regularly chews Naya's stuffed animals. Here she is with a new animal from Sheldon and Lisa. We all got a laugh out if it!!
Last night, nothing happened! And that is exactly how we like it. We slept and woke up, boring hugh? Today is forecasted to be a very nice day here in Philly. 60 degrees. So I think we'll head outside for a little walk with the dogs and fresh air in our lungs. Nothing is going on for the next couple of days so we have plenty of time to open all the amazing gifts you have sent to Naya over the last couple of weeks. Literally, there are so many it is going to take that long to look through them. Thank you for your cards filled with encouragement and the gifts which are making Naya laugh and picking up her spirits.
She is processing the concept of what lies ahead in her treatment plan as well as the seriousness of her disease which gets her down as she thinks through exactly what that means to her. I think she will continue to process this for the next several days. Certainly we will be here with her to make sure she keeps focused on success.
You support is even more important now for her to see so hang in there with us which I know you will.
I have no way to express how much today means to all of us. It has been very emotional for all of us but especially Naya. Naya is so happy to be home and also overwhelmed by the gifts, notes and baskets of food. She has cried several times today with tears of happiness as it dawned on her what she has gone through. We also believe she is realizing that our lives have changed. It is all about moments in life and times like these remind us of that. We have been together today - a gift that cannot be taken for granted.
She is planning the week out and wants to visit the barn and horses, cook with her grandma Taru, and see her classmates at AIS. She misses her life and her friends. We are going to help her find her new path and reconnect this week.
Wow! It is amazing to have Naya back home. She is very, very, happy to be sitting on the coach watching TV. What a beautiful day to come home, 64 degrees and sunny. We took a walk down the drive when we got home just to enjoy the dogs running and the wind blowing in our hair. It was fantastic! Now, let's take a few days to chill and unwind before we begin the rest of the journey to cure. We start the treatment phase this week. We have to remember it is a marathon, not a sprint. That is very easy to say, and we say it about so many things, but in this case we really have to pace ourselves. This isn't going go away with a weekend of sleep and rest.
It has been a tough week for me, but I am finally heading home! I feel as if I have spent my whole life in this hospital. Because for the few weeks that i have been here, I have had many procedures, IVs stuck in me, and blood taken from me. So it is a relief for me to finally be heading home. I have a port in me so I don't have to have IVs anymore. It allows me to swim or do anything else I would like. When I get home I will probably play with my dogs and I will hopefully go to my barn to see the horses. I can't ride for a couple of months but I can still visit the horses.
I can't do sports unless its swimming or maybe softball. But I can't ride because I am recovering from my surgery.
Next time I write, I'll tell you about beads of courage.
I also wanted to thank you for supporting me and sending comments to help me through this.
Sincerely,
Naya
Naya is kicking butt at temple run. She feels better today - best on two weeks. She git a shower too! Two procedures and eating are today's milestones. - if all goes well, we are homebound soon.
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Um good, a hot shower, a girls hair washed, yea, that feels good! We had a very restful sleep last night. Almost 15 hours of pure rejuvenation. So now we are off to have the bone marrow test and the port-a-cath installed starting sometime between 11-1.
Then we will see how we feel post those two sessions and make the determination if we are going home tonight or hanging at CHOP for one more night.
Will let you all know later in the day. See ya.
