Monthly Update

So, I forgot to mention a few things in my last post. My mom had a stroke November 25 and I found out we are moving. We are going to move in a few weeks.

Finally! A Post!

So its been two and a half years since the last post but here's the short version of what I've been doing.

• I've had two birthdays
• I've gone to girls camp twice
• I've become a teenager :-) :-) :-)
• I've gotten my pop-up trailer and gone to Bryce Canyon and Zion National Parks
• I've entered a charter school for homeschool kids
• I've taken second place in a tap competiton
• My tumors are still growing slowly
• I've enjoyed myself

That's the general lowdown. Now that it's me writing instead of my mom, I hope to post more often. Be prepared to read everything that is important to a teenager. In short, my day-to-day life, my emotional ups-and-downs, when I hit any kind of public milestone ever, and of course, health updates.

P.S. I'm currently learning the first song on this playlist in guitar.

A Wishing Place

Just in case you were wondering, brain surgeries aren't fun. They're right up there with MRIs, doctor appointments, physical therapy exercises, IVs and long hours and hours of treatment time. Luckily, there are few people who realized that 25 years ago and came up with a way to make life a little more enjoyable for kids stuck with a seriously miserable condition.

We found out last month that Sada gets to have a wish granted by Make A Wish! Last year, she was reading about brain tumor kids and heard about the Make A Wish organization. Since then she has researched everything she could find about them and all the wishes they've granted throughout the US. We were invited up to their amazing building, called A Wishing Place, in Salt Lake last Tuesday and she gave the volunteers and workers a perfect summary of MAW's history - love that girl. They gave our family a tour of the place, we played a wish game to narrow down what wishes were really most important to her, and then she got to unlock the Wishing Tower with her wish key (imagine an indoor waterfall, fairy lights, chimes, glowing glass floor - pretty spiffy) and write down her top wishes and send them on to the wish wizard.

They'll keep in touch with us while figuring out how to make one of her wishes come true - right now, she's wishing for a motorhome and has two dozen reasons why she wants one, but I'm pretty sure their policy is no vehicles with motors that run so we'll see what they come up with.

This past month has been truly amazing - receiving support from people who don't have to be involved in our chaos but want to help make life a little more enjoyable is an incredible blessing.

Don't let me push, don't let me pull.....

Physical therapy started last week. We waited though the summer to see how Sada would recover on her own just running around outside, and to give Zach a little time to grow up and make the hours of appointments a little more feasible, and because Now I Can was booked up with out-of-town clients while school was out. Sada is doing good for having had her head examined from the inside out a few months ago, but she's still pretty tipsy at the most inopportune times.

Our friendly neighborhood physical therapist Sergio was waiting at Now I Can with mats, stairs and Kinesio tape. She's in for months of resistance training, balance and coordination exercise, taping for structural support and by this winter she'll be so used to hearing Sergio telling her "Don't let me push, don't let me pull, don't let me push, don't let me pull....." she'll probably share her newfound exercise knowledge with Zach to get him walking sooner. After 2 sessions, we could see a difference in her walk and posture - that place make miracles happen!

Now I Can had a concert tonight at the Scera Shell to help fund their scholarship program for families that can't afford the full cost of their session and all their clients were invited. Since it was going to be a late night, Grandma put the younger kids to bed and Mom and Dad got a night out with Sada and Alexis (and Zach 'cause he's cute). The music was great, they raised an amazing amount of money, and Zach loved dancing with his sisters under the stars.

Eye check

Sada's favorite appointments at Primary Children's are the peripheral vision checks - looking through a big satellite dish and beeping a buzzer when a flashy light shines on the wall ranks pretty high compared to blood draws, IVs and laying still on the MRI table for 40 minutes.

Not a lot of change - no sight in her left eye, only central vision in her right, and maybe a bit of improvement because the blind spot seems to be a little smaller than in her original test a year and a half ago. Her prescription has gotten stronger so she sees clearly up to about 5 inches in front of her face without her glasses. But none of that really matters to her as long as she can still devour a book or two a day :-)

Ride for Kids!

The party celebrating Kyra & Daddy's birthdays came one day late but had a whole lot of style. It all started exactly a week ago watching late, late, late shows while feeding a baby. One outdoors show was talking about a fundraiser ride for brain tumor kids... then the station went to commercial. I called the national number on Monday to find out about it and before I got any real information our entire family was officially signed up for a motorcycle trip up Emigration Canyon on August 14.

The Ride for Kids is a fundraiser for the Pediatric Brain Tumor Foundation. Any kids who have had brain tumors and their families are invited to be "guests of honor" for the day. In the parking lot of This is the Place Monument, two parents with a whole lot of duckies following behind kind of stood out in a crowd of black leather and 80 decked-out Harleys and Hondas. We got t-shirts, do-rags (even Zach), breakfast, and then the kids and Dad loaded up in sidecars with and headed up to Morgan with Mom bringing up the rear of the whole procession. It took a little over an hour and Kyra, Zach and Jason all took great naps on the way.

We had lunch at the park in Morgan while they introduced 11 other brain tumor kids and announced that during this ride they were able to raise over $35,000 for pediatric brain tumor research. Pretty impressive! All the kids were interviewed - the chairman asked Sada if she'd like to say anything special to the audience - 100+ bikers in leather, chains, lots of long beards and braids, and a couple of braided beards. Sada warned them that if they ever ride in a sidecar, they'd better get comfortable at the beginning because being squished for an hour is REALLY miserable. She didn't mention that she'd ridden cuddled up with a 6'4" dad in a one-person seat.

Bike #5 had Jeff and Sada, another brain tumor girl on the seat and the driver. Bike #8 was loaded with Jason and Paige in the sidecar strapped in with a five-point racing harness, Alexis on back, and the driver. The chopper behind them had an adorable chiuaua in a black leather jacket named Rusty who had a case permanently attached on the back of the bike and a blinged-out sign hanging from the case that said "Are we there yet?"

The song that came on the radio as I was driving up the canyon with Zach and Kyra following 12 state troopers on cycles with flashing lights and a mile long line of reving engines pretty much said it all:

It's something unpredictable
But in the end it's right....
I hope you had the time of your life

P.S. If you watch this video, Sada and Jeff drive by at 1:14 and Paige, Jason and Alexis pass by at 1:22.

Best Birthday in the World

Since Sada's MRI was scheduled on Alexis' birthday, both girls got to go up to Primary Children's and hang out in Salt Lake for the day (Zach came along for ride, too).

First best present - an almost perfect MRI for Sada! There is a tiny line of enhancement (glow) that shows up on the edge of where one of the tumors was attached, but it is less bright than it was right after surgery and it's pretty straight so it could easily be a blood vessel or scar. Even if it is tumor, it hasn't grown since May which is what the doctors really care about.

After 3 hours of MRIing and doctor appointments, we finally picked up lunch at the hospital deli (Alexis declared it the best wrap EVER) and got a huckleberry/mango yogurt birthday parfait (minus the candle but wishing still worked without a flame).

Then we headed to IKEA where they had a face painter who dabbled in giant balloon animals (she was also a retired ER nurse at Primary Children's). We left Alexis and Sada at the store and came home with a glittering tiger, a shimmering monkey, and 8 balloon creatures that our new-found friend twisted up for all the kids at home so we could have a real birthday party with gifts galore for everyone.

Next we stopped by Thanksgiving Point for some fishing. We'd talked to the director in May and got permission to catch a couple koi babies. The fishies were finally big enough to transplant and maybe even survive. After 30 minutes of unrewarded patience, the kids finally threw in some fish food pellets and we swooped in while the swimmers were otherwise occupied. Now they're safe in their tank swimming through a turtle tunnel and fake plants - ah, the life!

By the time we got home at 8pm, Alexis decided that it was the best birthday anyone had ever had... and Zach giggled in agreement.