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.

36 hours old and still adorable

Yes, we like Zach...

...and we love his itty bitty toes, too.

That's my BABY!!!!!

Here's Zachary Aaron Wright!

Only one week late and weighing in at 8 lbs, 20.5" long with lots of dark hair, he's the latest and greatest hearthrob around this house. He already has everyone wrapped around his itty, bitty fingers.

Amber woke up and spent a half hour at the car shop getting parts ordered, came home and rested for a half hour until Jeff left for work, killed an invading army of ants, ran a test kit for a patient down to the office, got home around 12:15, and had a baby at 2:04pm. For future reference, labor is official when the contractions feel like your pelvis is being pried apart. No denying it, just go with the flow. (And get the waterbirth tub filled quick. We made it with 20 minutes to spare :-)

Oncology Report

Another long afternoon at Primary Children's. This time it was to meet the "new" neuro-oncologist who has been there since last spring and helps design protocols for all the brain tumor kids. We waited for an hour, and kept waiting a little longer, then a nurse popped in to let us know that there were actually two neuro-oncologists and we'd be seeing the doctor who's been working at Primary Children's for 20 years. Dr. Bruggers is the same one we talked to last year about this time and was absolutely wonderful.

She came in a few minutes later and spent over an hour explaining what the options are for JPAs - 1. Radiation since Sada's over 10 now, 2. Chemo combinations, 3. Another surgery when needed, and 4. Watch and wait to see how the tumors behave themselves then decide what to do. Right now, JPAs don't really respond across the board to any of the options - depends on the child, the tumor location and a hundred other variables they haven't been able to pinpoint. Sometimes the treatments help and sometimes they slow the growth down until the treatments are finished then the tumors grow like a high-grade tumor. Which means that unless there's a real necessity to try something because surgery isn't an option due to location, the entire brain tumor team - neuro-oncologists and neurosurgeons - would rather wait and see what happens every three months on the MRI than try something else that might have serious long-term side effects without helping the situation.

It was really nice to hear her say she didn't have any suggestions since no one really knows what a "best treatment" is for JPAs. No wonder the learning curve this past year has been so steep... climbing to infinity and beyond is exhausting.

Happy Birthday to Me!

Today was my 11th B-day! I got a secret agent spy kit, a T-shirt, two pairs of jeans, an interactive around the world, a world almanac, a "Giant Pipe Cleaner Party," and a Flip 'n Stack Tiki Island game. We had a bubble fiesta and shot off soda geysers. It was FUN! I wonder what I'll do next year. . .

Pathology's good!

After getting out all the visible tumors, the neurosurgeon sent samples of each into two different pathology labs. All 4 tumors came back as grade 1 Juvenile Pilocytic Astrocytomas . Broken down: cancers are graded between 1 - 4, depending on the spread and rate of growth, with grade 4 meaning it has spread to other body systems and is growing aggressively.

Sada's first big tumor was a JPA, too, so luckily the cells haven't differentiated to something else. They also haven't travelled down her spinal cord yet, so we're still at grade 1. The neurosurgeon was really wondering if the top tumor was a combination of different types of cells because there were two textures that were obviously different while he was removing it. But since everything came back the same, it means oncology will still reject us, we're back on the "watch and wait" plan through neurosurgery to see if there is more regrowth, and Dr. Daddy can keep refining her protocols until she can go a year between MRIs. A new scan every 2-3 months gets old (and expensive) really fast, in spite of the in-house movies and prizes.

Photo Recap of the Best Parts of the Last Week

Tuesday morning: Lizzie, the hospital buddy, with a bandaid over her IV site, getting prepped for surgery. Sada was ready to go, too, hangng out in the Same Day surgery waiting room.

Sada also had 10 foam Cheerios stuck to her head to help map where the tumors were on the MRI. In surgery they use the same stickers to locate the tumors without having to do any exploratory surgery.

Wednesday morning: Post-op MRI to see if there is any bleeding or unusual swelling around the operation site.



Thursday afternoon: Daisy, a volunteer dog, came by to see if there were any kids around willing to blow bubbles for her - she really liked how they tasted.

Friday afternoon: Sada finally felt good enough in the third floor playroom to stand up at the foosball table and beat Mom with a score of 2 to 1 .

Saturday: Kabooms, kaflashes and kabubbles everywhere while the volcano exploded all over in an explosion of color. Did you know that it makes a disaster if you don't spray the vinegar right into the crater?

Sunday afternoon: Playing a song is fun to do, fun to do, to do to do... even after brain surgery. Sada was passing time waiting for her lunch to arrive and discharge papers to be processed. In spite of all the fun, she was even more ready than Mom and Dad to get back home!

Happy Mother's Day

Sometimes there are more appreciated things in life than flowers, chocolates, and promises that are never intended to be kept. Things like tucking a tired bug into her own bed, in her own pajamas, and knowing no one will be coming in to check vitals in an hour and a half.

William Black (Talitha's dad www.talithablack.blogspot.com) invited us to church services this morning. Primary Children's has a branch that meets for a half-hour every Sunday. It consisted of a handful of kids hooked up to IVs and about 40 parents from different wings of the hospital. There were 9 people wearing ties and black pants - the branch presidency and the bretheren preparing and passing the sacrament. The rest of us followed the "Come as you are" instructions pretty literally. It was nice to feel the spirit, especially during the prayers and testimonies that reiterated over and over "Thy will be done." That's one thing we've learned over the past few years. Pray like everything depends on the Lord, work like it all depends on you, and He will make up for the discrepencies that are bound to show up.

We got the ok to be discharged this afternoon after Dr. Kestle came back in to do a final check on Sada and let us know the next MRI will be scheduled 3 months out. He reviewed where the tumors were (three growing from the brainstem and one up high) and promised to send a copy of the pathology report when it gets back.

Right before we left, Dr. Daddy tracked down a non-wheely chair (harder than it sounds in a hospital) and put up Sada's ceiling tile in the Neurotrauma Unit hallway outside the hydrotherapy room where lots of kids will get to enjoy it. Room service would send up little bendy aliens at breakfast each day, and if Sada asked nicely, they'd send one up with each meal she ordered. In honor of the gaggle of aliens she came home with, she decided to make one that could hang out at the hospital forever. It turned out kind of adorable!

Bug-Eyed Movie Marathon

The opthamology resident came in this morning to check out Sada's beautiful peepers. She still has a lot of bouncing when she's looking right at anything, totally normal for where the top tumor was removed (that's the area that controls eye movement). Last time it took a month or two to settle down, so we'll see. Her left eye is angled in and up compared to her right eye - a little more than before surgery, but less than after the first time around. That should get better as the inflamation in the cerebellum goes down. Most of the side-effects just take time and patience and a little physical therapy to re-teach the body what it knew before.

Because they needed to check her optic nerves, she had dialated pupils from 11am all afternoon. We brought in a DVD cart and watched a handful of movies while her eyes went back to normal. Then we set off a volcano on the 3rd floor patio made out of Mentos and Diet Coke. It was a little anti-climatic (probably needed a narrower neck to really spout off) so we headed over to the playroom to make another vinegar/baking soda volcano out of lots of aluminum foil, paint, and all kinds of medical equipment. Super-sized fun when you squirt the red vinegar & soap into the volcano with a 60cc syringe!

They'll probably let us out tomorrow morning so Sada's loading up on calories today... she's gone through First Breakfast, Second Breakfast, First Lunch, Snack Time, Second Lunch, and is just about to start on Dinner (with a Bedtime Snack to follow). She's going to be at least a pound or two heavier when we get home if Dr. Daddy has anything to do with it.

Attitude changes everything

The difference between a mudpuddle and a geyser is enthusiasm, and the playroom has a billion different ways to get the giggles coming. Sada made a rainbow of silly putty (red and yellow and pink and green, purple and orange and blue... I can sing a rainbow, sing a rainbow, sing a rainbow tooooooooo), a giganto exploding volcano, cornstarch goo, and came up with a dozen other experiments to try out. Add in a couple dozen games and we spent 3 hours there today! Then we got back to the unit and Sada was crawling over the bed, walking around the room, and acting normal the whole time - distractions are amazing!

The pathology reports won't be back until Monday and we're hoping to be gone by then if Sada can get a little more balance back (physical therapy is now on the daily routine) and keeps food down (two bowls of oatmeal tonight and a banana are a great start).

Rub-A-Dub Dub

You don't have to be in a tub to appreciate sea-sickness patches... they also work on post-brain surgery nausea. For the last hour Sada's been sitting up IN A CHAIR watching movies and eating mouthfuls of blueberry muffins and rice pudding. She's been eating for the last couple days, but hasn't been able to keep much down because the bottom tumor was right on the brainstem's nausea button and any head movement was like being in the middle of Utah Lake during a windstorm chumming June suckers. Room-service gyros are on the menu for dinner tonight.

Speaking of tubs, she got dunked in the 6' hydrotherapy tub this afternoon and loved every minute. They have a big sling chair that can be pumped up above the giant tub rim and lowered inside so the kids have a soft seat that reclines. Even big pregnant mommies can give kids baths with two fingers :-)

Dr. Kestle stopped by to make sure nothing horrid had happened during the night. He did say that when Sada woke up in the operating room, he asked how she was doing and she gave him two thumbs up. The pathology reports should be back tomorrow.

Emily is a Child Life specialist from Same Day surgery. Sada met her during a pre-surgery class a couple weeks ago when Sada ended up being the only one to show up, and she was here when Sada checked in for surgery on Tuesday (armed with beads, games and lots of surgical tools and supplies to stick all over Lizzie, Sada's hospital buddy). She's been by every day since we got here to make sure Sada was having fun and had plenty to do (and followed up with everything to make sure it happened!). Sada had a short foosball tournament and made picture frames in the playroom this morning. And we found out that the MRI team has the best selection of unscratched DVDs in the hospital. If we ask nicely and return them before taking another out, we'll have enough to last at least until next week. Plus, any minute we should have some kind of furry friend stopping by to hang out for a little while. In the meantime, Emily brought by enough neon elastics, clippies and headbands for a beauty pagent. Even though Primary Children's was great during Christmas week last time, there are also huge pluses to being here during normal business hours when you get bored, especially when you find a fun friend to play with!

Good thing post-surgery is easier the second time around

Sada got out of the operating room around 8 pm last night, so total surgery time ended up being just over 7 hours (like her first). They took their time getting through the extra scar tissue and Dr. Kestle took tumors out of 4 different spots - some of which didn't show up on the MRI because they were so small. No wonder we felt good about doing surgery now.

She came out of anesthesia in about 3 minutes instead of 30 minutes and woke up in the operating room as they were getting ready to transport to PICU. The anesthesiologist came in a little later to say, "Your daughter is adorable. All of a sudden she was talking, asking what time it was and if it was AM or PM." That never happens, apparently. The nurses and techs keep repeating, "She's amazing!" because she's recovering so fast... and she because asks questions with medical vocabulary which always floors hospital staff (easy ways to make a good first impression). Daddy is across the hall, outside on the flower covered patio wheeling her around right now, and she's already walked back and forth across her room with someone steadying her shoulders.

This cuddle bug is a keeper.

The verdict is...

...the tumors have both grown, and the top one is growing into a Q-shape which will get in the way of the CSF flow if it keeps reaching out. Not a good thing when trying to avoid hydrocephalus. The bottom one isn't blocking any fluid yet, but the neurosurgeon couldn't tell if it was coming out of the brain stem or the cerebellum - so it has definitely gotten big enough to make it intermittently problematic. Or in layman's terms - getting them out now it a really, really good thing.

The surgery is planned to start around 1pm and depending how scar tissue healed from the last surgery, she should be out and in the Pediatric ICU sometime after 8pm. She's super excited and a little bit nervous (because she's not sure what the operating room looks like - but she's been promised a tour so everything should be lovely). And Mom and Dad are surprisingly calm - might have a little to do with the hundreds of prayers that have been offered on her behalf. Thank you for helping make today a lot more peaceful than it could have been.

Our cell phone will be off most of the time we're in the hospital and they're planning on keeping her around for a week. Our phone time is limited to emergencies only, so if you need to get a hold of us, leave a comment on the blog!

To surgery or not to surgery

So, to stop the suspense lurking in your minds, we don't know if I'm having surgery. Really! I know that just starts all the questions again. We'll find out tomorrow after the radiologist measures the tumors to see if they have grown or not... because the MRI scans from today look a lot like the scans from March. Dr. Kestle will call us tomorrow before noon to let us know the results and then I'll let everyone else know what the rest of my week will be like. I have GPS tracking dots all over my head right now - there are ten foam cheerios super-glued to my scalp (they even shaved off part of my hair in lots of places). The dots are very annoying because my glasses don't fit over them well. I have to leave them on until we find out about surgery... so it will be a long bumpy night for me. Sweet dreams!