One down, new one to overcome

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.  

Better...

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.

Tough day yesterday

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.

First day of treatment

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.

What's Next

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.

Visiting the barn and horses

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.

Fun day for Naya

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!

Gabby's new toys

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!!

Family together

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.

Oh to be Home

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.

Going home (from Naya)

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

Temple run

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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What a day

Well - Naya is recovering from the shunt and it seems to be working fine. But all of this stress and the procedures have now caused digestion issues and discomfort. And there is more to come tomorrow. She got to sleep today with the help of meds, and we think it was really good for her to finally rest.

Because of her digestion, she is not allowed to eat - yet again! But hopefully her system will be better tomorrow.

Our job right now is to be her full time advocate and challenge everyone to keep it simple and work to get her strong and allow her to recover. We saved her from an extra procedure and another prick in her arm. GO PARENTS!

She woke up this afternoon in good spirits and no pain. Whew. She even gave Zak a hard time. That personality is there and strong.

A truly touching moment happened when she cried about how much we were helping her and loved her. We of course know it is not only our responsibility but our only desire, but I guess a 9-year old doesn't always realize that about their parents.

Oh What a Team

Naya is going in for a bone marrow test and in good spirits thanks to Hank. Here they are listening to Oh What a Night by Frankie Valli. Hank is going to turn her into a junkie of music from 40 Years ago.

Lucky

Today as Naya struggled to do the basics of sitting and walking, she and I talked about how brave she is. I don't know what I said to prompt her point but she told me that we are a very lucky family and she was so fortunate and lucky. Imagine the character she has to be able to say that given her condition. Even in this horrible time, we are lucky to have so much love and support surrounding her-and blessed with two amazing children.

Inspired

Naya has been through more than any child should have to go through, and she is facing a long road ahead. I am so inspired by her spirit, bravery and strength. She is trusting us and her doctors to get her well-and doing her part to make that happen. She is amazing.

A Long Day - Even A Longer Night

After a very long day Naya came out of the MRI with a bad headache.  I checked her incision and it was pretty clear to me that cerebral spinal fluid (CSF) was pulling around her incision so I asked for the neurosurgeon to come check her out before we went home.  Sure enough, he agreed and asked if she had eaten anything after the MRI.  She didn't so he went immediately to schedule an operating room so he could install a shunt in her tonight. The surgery just started at 8:14.  It should make her much more comfortable.  The best day she has had since the initial surgery was when we brought her back into the hospital because she was leaking a little CSF.  My hypothesis is that while the CSF was leaking it relieved all the pressure from her brain and made her feel like the Naya of old.  Lets hope the shunt does the same thing and makes her much more comfortable.

Certainly not the outcome from the day that we wanted but we will take it one day at a time.

AIS with Naya?

Naya is getting her fitting and an MRI today. While she was waiting, they have her a cozy pillow case to keep her comfortable. Naya thought they were the same ones that AIS created for MLK day. The nurse thinks they are. How ironic that one ended up with Naya today! Hopefully a good sign that the day will be good.

Eating a starburst in the ER. We come prepared