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!

For Sale - Cheep

We've adopted a new pet.... well, it's more like we've been adopted by a forlorn robin. For the past month, our friendly neighborhood wanna-be rooster has been crashing into Mom and Dad's bedroom window almost every day starting at 6:15am. And not just a "Whoops, excuse me," kind of bump. These are head-banging, beak-rattling, monster truck collisions that happen 3 or 4 times in a row until Dodo (appropriately named, don't ya think) loses his momentum and flies back to his perch on the fence post 4 feet away. He huffs and puffs and tries again. And again. And again.

The first two days we felt sorry for the guy. He must have been scared of his reflection. But after one morning of 200-300 mid-air collisions with himself, he lost all sympathy on this side of the window. Kyra laughs hysterically each time he flattens himself up against the glass, leaving smears and feathers behind to mark his short-lived victory.

By the third day, we could barely see out the top half of the window because it was so dirty. The kids put up pictures of cats, owls, snakes, and a green witch (going for the scare tactic). Dodo really didn't care. Even with a huge cobra staring him in the face he came back for more humiliation and beak squashing. Shiny foil didn't do squat, and surprisingly, the pink striped pajama pants made him even more agitated. Who knew? One week after first crashing (into) our party he started snooping around other windows, pecking until someone bangs back and scares him away.

After four weeks in this one-sided relationship, we would prefer that Dodo find a cute little chick to call his own (in another yard) instead of repeatedly ramming our house every 3-4 minutes. Feathers stuck to the window are not helping beautify the view of our neighbor's dining room. The fowl is in obviously bird-brained and if he wants to self-inflict brain damage, it is his right to do so. If you'd like to trade any of your indigenous wildlife for this misguided woodpecker who is determined to take himself out of the gene pool, the only request we have is that our new pets be a slightly more intelligent species than those that currently surround us.

Seven years ago.....

... we had a perfect morning, afternoon and evening.
... the grandma came over to play with 3 granddaughters all morning long instead of paying bills.
... the cutest baby in the world decided giggling was more important than eating (3 times in a row).
... the daddy got home from his residency an hour early "just because."
... two big sisters helped tuck their baby bug in for a nap and sang her to sleep.
... the mommy made a three-course dinner and everything turned out deliciously delectable.
... the daddy put two big sisters to bed.
... the mommy went in to get the baby bug out of bed.
... it was the longest night of our lives.

We took some butterflies, ceramic bunnies and a couple wind chimes up to the cemetery today. The two dozen daffodils we planted 6 years ago have multiplied so much the kids were sure a few of them were silk. They were all in perfect bloom - just the right backdrop for the two deer and handful of rabbits that were munching on graveside flowers this afternoon.

Alexis threw her mini-parachute into a tree and another family lent us a shovel to get it down. Their 4 year-old died last fall... there are so many common bonds with too many other families.

I would never wish our experiences on anyone else (even those nasty girls in 6th grade), but I can't imagine our lives any other way. Megan couldn't stay - we know that. The bittersweet memories and emptiness still sting, but not quite as much now as in the first 5 or 6 years. The sweet parts of life are so much more precious since we know how the alternative feels. Being able to recognize our guardian angel when she pops in is amazing. Little things like being able to kiss a scraped knee or fix a botched haircut (a la scissor-wielding siblings) or tuck in another baby bug with a song and a snuggle aren't taken for granted as often. Even brain tumors can be laughed at because we're all still here figuring out whatever we're supposed to learn from this life lesson. It will be great to get the report card at graduation and find out what we're actually being graded on.

But for now, it would be nice if some of the experiences weren't quite so piercing...

especially on days like today.

The wait is over!

We've been playing phone tag with Sada's neurosurgeon since the MRI on March 11 to find out what he thinks should be the next step, and he finally got back to us today (after realizing someone had put Sada's chart away prematurely). He spoke with another oncologist - and, you guessed it, five out of five oncologists prefer surgery to chemo for treating this type of tumor.

Given that, Dr. Kestle came up with a perfect scenario: he'll schedule her second brain surgery for the 4th of May, which includes a pre-surgical MRI the night before. If the tumors have stayed the same size or shrunk, surgery is immediately cancelled and we go home for another 2-3 months until the next scan. If the tumors grow, during the MRI they will mark her head with dots to make a "GPS map" of where the tumors are so there's no hunting once inside and the surgery will be much faster.

The resident we talked to after the last MRI thought the surgery would be likely scheduled this week, so having an extra month to see if Sada's current "treatment plan" works is marvelous! Two weeks is a short time to show any changes, but 8 weeks gives her body a chance to really fight the tumors. If what she's doing now doesn't work, then surgery will be an absolute necessity in 4 weeks to stop the inevitible hydrocephalus and accompanying problems. But if it does work then we'll know without a doubt that - contrair to popular belief - there is a way to control the tumor growth (which gives a whole new meaning to "light at the end of the tunnel").

Now we have a time-table for Sada to look forward to (which helps unbelieveably with her compliance), a time-out for tired kidneys to recover before having to head back up to Primary Children's for another contrast MRI scan, and time to take a walk or two or ten and smell the hyacinths that are starting to poke up in the front yard. To everything there is a season, and so far Spring is looking lovely.

Four strikes you're out?!?!

Four, yes, four different oncologist have now rejected Sada as a potential chemotherapy patient. That's one big bridge we don't have to cross! After seeing dozens upon dozens of chemo patients pre- and post-treatment, Jeff decided long ago that chemo and radiation were literally the very last options he would ever want to have to consider giving anyone (let alone one of his children). They do work fast and furiously, and sometimes they are THE option to survive the most aggressive cancers. In our case, Sada's astrocytoma doesn't respond to current chemo treatments reliably and the doctors at Primary Children's won't try something that they aren't sure will help. We're not about to beg to be admitted!

But it does leave Sada in limbo. The neurosurgeon is there, ready and waiting if she needs surgery. The oncologists are standing by for consults before and after surgery (but we now know where all of them stand regarding chemo for this tumor type). Which leaves her loyal and faithful and loving pediatrician to formulate a treatment plan. To say the least, Dr. Daddy has hurdled an impressive learning curve over the past 16 months.

The options we have right now are doing nothing and waiting until the tumors shrink (or until they are big enough to warrant surgery); or researching, following up with lots of prayer, and going with the treatments we feel will be most important at this stage. That part has been surprisingly simple, because we have had so much heavenly help - no other explanations possible. When something is right, everything clicks into place like a pair of ruby slippers. And when it's not - it melts away without so much as a screaming, flying monkey to mourn its passing.

Actually, the hardest part of this past year has been trying to explain to others why we're doing what we're doing. We've had so many friends and family members give us ideas and suggestions (some much more forcefully than others, trying to justify why their therapy is the answer). There are literally thousands of options out there. Some of the most helpful treatments for other cancers will cause a pediatric tumor to grow out of control within a few weeks. Even the most respected brain tumor specialists in the world won't work with pediatric tumors because they behave so differently than adult tumors. But those who do work with peds patients are amazing, and there is incredible research going on that really give us hope, especially in Sada's case.

I guess that's been the biggest learning curve - being strong enough to handle the criticism and yanking and pulling without letting the ball drop with what we're already sure of. Prayer has gotten her a long ways thus far, and in spite of the recent tumor growth, we're confident she's on the right track, wherever that track leads (and if you happen to have a map, PLEASE send it over!). Our friends have a sign in their house they get to read while taking care of their 18mo daughter with a brain tumor that sums up life pretty well, "Faith makes things possible... not easy."

Knock Knock...

Who's there?

Irish.

Irish who?

Irish you a Happy St. Patrick's Day!

We had a St. Patrick's party today, with big signs, shamrock scavenger hunts, hats, three legged races, leprechaun traps, sidewalk murals, and lots and lots of fun. Of course, everyone wore something green. And we got green glow-in-the-dark rings from Mommy leprechaun. We also know what kind of boy to marry, thanks to Darby O'Gill, "A fine, strong lad with temperate ways." Just like Dad.

You put your hand up in the air,
Your other hand on your hip.
You tap your toe,
You tap your heel,
You bounce your knee a wee bit.
You dance and prance around the room
And circle one - two - three.
Saints be praised, I'm most amazed; You all look Irish to me!

March MRI

The last two weeks have been exciting - not in a good way. A few of Sada's original symptoms have slowly been making their way onto center stage (swallowing coordination, focus, eye movement, etc.) which put Mom and Dr. Daddy on high alert. After others started noticing, too, we called the neurosurgeon to see if we could move her next MRI up a couple weeks. After an hour on the phone, it was a no go. I couldn't exactly get any reassurances out of the nurse, either, so 30 minutes later I was back on the phone to confirm that Sada was on a cancellation list. She wasn't, but 45 minutes later an amazing radiology secretary found a cancellation 3 hours later that she could hold for Sada - SOLD!

Sada was in and out of the machine within 30 minutes and the on-call radiologist let us go back to the viewing room to take a tour of Sada's brain. Since her original tumor was removed, she's had two spots on the top and bottom that have been growing slowly (off and on) over the past 6 months. The lower spot grew by 10% from Dec to March (20% change is when they officially diagnose a tumor as having grown) and is now putting a little pressure on the brain stem - just enough to cause symptoms but not enough to stop cerebral-spinal fluid or CSF from flowing (no hydrocephalus). That's extremely good news because we've been refining and cutting back on all non-essential therapies and treatments for the past few months, and now this gives us enough time before another surgery is absolutely necessary to add back in the more time-consuming/boring things and really see how they affect the tumor (make it shrink, make it shrink, make it shrink, shrink, shrink).

Don't get me wrong - she really doesn't need anything extra growing in her brain. It's like adding 1 more person to a VW bug with 6 people already inside. In her case, the windows are still rolled down to get fresh air inside. And as long as the CSF keeps circulating, non-life threatening symptoms are manageable. Miserable at times, but manageable.

Best of all, Sada's all on board for not having anyone cut the invading cells out of her cute little noggin. She has been amazingly cheerful and remembers what's on her Have to, Want to, and Should do lists for the day and prioritizes pretty well. She also downs pills like a champ - even at 1am. Like they learned in Primary on Sunday, a positive attitude makes life a much happier experience!

Serious trauma

Jeff was talking to me in the kitchen about how he had a hard time staying asleep last night while Paige was meandering through the family room. She asked him why, and since she prays two to three times a day that she won't have scary dreams, he had to answer, "Maybe I had a nightmare."

"About what?"
"What do you think?"
"Maybe you dreamed the kitchen was clean and didn't know what to do."

Then she walked out the back door to play.

Our poor kids.

Change

Between the snow, rain, sleet and sunshine we've been going outside to check on all the dirt. Yes, dirt. Because under the dirt we planted crocuses and daffodils. And the closer it gets to spring, the more curious they become and start popping up all over - like last week. We have green little sticks all over our front yard popping up in dirt, snow, and through the leaves that have collected all winter long. A few more weeks and we'll have a rainbow growing in our front yard! Change is inevitable; may as well appreciate the best parts!

We Got The Best Christmas Present Ever...

...according to the kids and we all know they are the ones who decide what makes the "Good, Better, Best!" cut. For the past couple weeks, anyone who comes to the door gets to see them all gather and yell the same unison announcement "Mom's going to have a baby!" and then they scatter in different directions trying to remember what they were doing before fufilling their self-appointed announcer-bunny positions.

Baby #7 will most likely be available for sibling adoration during the first part of June, given the producer's tendency to run well beyond the planned release date on the previous six. Should be cute, cuddly, and very familiar with zbrts by that time. Will definitely be a suprise, although with a current 1 boy to 5 girl ratio, the specialization factor has to be taken very, very seriously - and tiny changes can cause massive shifts in the princesses to prince equilibrium. There are only so many dragons to slay in a kingdom each day :-)