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.