Thursday we took Annie to Children’s Hospital in Dallas for another MRI and then a consultation with her neurosurgeon.
As you know, we had prayed for the tumor to be gone when we went back for the MRI. We prayed that God would take it away in a supernatural way that only God Himself could do.
And He chose not to do that.
For whatever reason, our journey with this whole tumor situation is not over yet.
For whatever reason, God has different plans for us and for Annie.
The MRI went well; the staff of Children’s is AMAZING….more on that later.
The consultation with the neurosurgeon, Dr. Sacco, followed.
I knew as soon as I walked into his office and saw her MRI picture pulled up on his computer screen….there was the tumor, like a glowing white lightbulb in the center of her brain…..I saw it from across the room.
My heart sank.
I’m not going to lie, I was sick, sad and disappointed.
HUNDREDS, if not THOUSANDS, have prayed for Annie. Many have gone without food for many days at a time while they prayed for Annie.
And I’m not going to lie, I don’t understand.
I’m not going to lie, my faith is a little shaken, and I feel a little bit rejected…sort of like in college when I was dumped by a boyfriend. I feel dumped. And that’s probably more info than I should put on a public blog, but that’s the honest truth about where I am.
Don’t get me wrong, I still know God is in control….I still know God can be trusted….I still want God to be glorified through our lives, no matter what happens…..I still know that God will see us through.
But I’m just stinging a little at the moment.
As far as a brain tumor goes, it looks, well, pretty good.
Its still small, measuring 10mm in this last MRI, which means it has either not grown in the past six weeks, or perhaps even shrunk a tiny amount (3mm or less), but that may just be a matter of the angle that he measured it from….if that makes any sense…..I’m not getting my hopes up.
The tumor isn’t blocking the flow of fluid, its not interfering with anything, not wrapped around any blood vessels or spinal stuff.
Dr. Sacco said that there are some parts of the brain that you can work on, and some parts you can’t….such as the spinal nerves….and this tumor isn’t touching that.
I drilled him with questions, every single question I could think of. I’ll try to remember most of what I asked and what his answers were.
WHERE IS THE TUMOR?
Technically in the 4th ventricle, which is a fluid-filled space beside the cerebellum. No major blood vessels anywhere near; no danger of damage to spinal stuff.
THE INCISION? (I made him show me on her head).
About an inch to one and a half inches straight up and down, near the bottom of her hairline at the back of her neck.
WILL THIS TUMOR COME OUT IN ONE PIECE? No…he will insert a little vacuum-type thing that will suck the tumor out from the inside, and then the periphery of it will have to be cut out.
BRAIN DAMAGE?Yes. Tumor cannot be reached without moving and/or cutting through brain matter. However, its the part of her brain that controls balance and coordination. At her age her brain can relearn quickly. He said, “If I had to put odds on it, I’d say that there is about a 20% chance that, WORST CASE SCENARIO, she will have MINOR balance and motor control issues, and that those issues will correct themselves within weeks.” And he DID say that would be the WORST case scenario.
OTHER SIDE EFFECTS? I can’t remember what he called this, but there is some kind of weird thing….cerebellar-something-syndrome…..where after cerebellum surgery the child won’t speak for a few weeks. This doesn’t happen in everyone but there is a chance it could happen. *THIS* kills my soul almost worse than any other aspect of this surgery. I don’t know how I can *NOT* hear her little helium-voice for WEEKS?? Are you kidding?? Annie sings all day long and I *NEED* her singing to brighten my days. I know, I know, in the grand scheme of things….minor…..BUT…..
LENGTH OF SURGERY? Four hours at the longest, and probably shorter. I asked him if a four-hour surgery is exhausting (don’t want him wearing out in the middle of my baby’s brain surgery) and he said, quote, “Four hours is nothing.” He told us he can do a 4-hour surgery a day, and even 6 and 8 hour surgeries are a piece of cake. After 8 hours, he is tired, but doesn’t max out until about 12 hours of surgery. After 12 hours, he has to wrap it up and come back to it a day or two later. He compared it to driving…..three or four hours of driving, not a big deal. Twelve hours, you might start to question what you’re seeing. I was reassured that Dr. Sacco can ably handle the rigors of brain surgery. As for me, the momma falling apart in the waiting room, four hours will seem like an eternity. How I will survive that, I do not know….
WHAT ARE THE ODDS OF HER HAVING A STROKE IN SURGERY? Next to none. Usually people who have strokes in brain surgery are the ones who have tumors wrapped in and around major blood vessels. This will not be a bloody surgery.
HOW MANY OF YOUR PATIENTS HAVE DIED IN SURGERY? None. Dr. Sacco has never lost a patient during surgery.
HOSPITALIZATION? One night in ICU, two nights in a regular recovery room, then home.
HOW LONG BEFORE SHE CAN SWIM AND DO NORMAL KID-STUFF? Two weeks. Can you believe that? Two weeks after brain surgery, Annie should be able to be a normal kid again.
MORE MRIs? MRI’s will be a part of Annie’s life for a long time to come.
I know I asked many more questions….his on-call schedule (don’t want him scrubbing in to do our surgery after he’s been on call for 36 hours straight, ya know?), how many surgeries he does a week, etc. (I want *OUR* case to get his full attention). You don’t care to know all the details, I’m sure, and even if you did I can’t really remember it all right now.
The BIG question that we have to decide is, WHEN? Dr. Sacco said if this were HIS child, he would wait and watch, do an MRI every 90 days or so, then intervene when it became necessary to do so. However I’m not sure my anxiety can handle that option; I sort of want to get it out now so we can biopsy it and see what’s in it, then be all back to normal in time for school to start in the fall.
But surgery is always risky, so I sort of DON’T want to do that.
I change my mind every 4.2 minutes. (One reason I had prayed that we would NOT have to make this call….)
But I for SURE don’t want to wait TOO long and interfere with a school year, with KB’s schedule, throw everyone around us into turmoil because we waited until the worst possible time, like Christmas day or something ;), or wait until the tumor is the size of a grapefruit… don’t worry, that’s not an option.
IF we do decide to watch and wait, we’ll jump in and schedule surgery the INSTANT we see even the tee-nine-ciest, most microscopic change in this tumor.
We have lots of praying and talking to do as we decide what to do and when to do it. I know everyone has an opinion and advice, but as Dr. Sacco said, “With all due respect to your friends….you two are the ones who have to make this decision. No one else knows what you know or has as much on the line here.”
And so with that said, I ask for you all to continue to pray for us in the days ahead……we have a major decision to make here.
I am so grateful to you all and thankful for all the emails and phone calls (even though I haven’t returned many of them…) and still amazed that SO many have prayed and are praying still….people we have never even met! I’m grateful to you new ‘online friends’ who I have gotten to know just because of this tumor….friends of friends of friends of friends who took the time to email me because they got a prayer request about Annie forwarded to them.
This will all be ok.
I do know that.
God will see us through.