Posterior Fossa Syndrome is, from what I’ve been told, somewhat of a medical mystery. It sometimes occurs after a surgery in the posterior fossa area of the brain, which includes the cerebellum, which is where Ian’s tumor was. It seems to occur most often when the tumor is a medulloblastoma, which is what Ian’s tumor was.
There are not a lot of answers, at least not any definitive ones. They cannot tell me how or why.
But I can tell you that it’s heartbreaking.
I can tell you that it’s gut wrenching.
I can tell you that it’s scary, that it strikes fear in the heart of a parent.
I know these things, because my son has Posterior Fossa Syndrome, and for the past several days it’s been the hardest part of this course we did not sign up for. A little over a week ago, Ian could walk and talk. He was a normal 17 yr old boy. He did normal things like lift weights, read books, eat large amounts of pizza, wash the dishes (by hand, our dishwasher broke well over a year ago…) without complaining, ok, that’s not really normal, at least the without complaining part, but that’s Ian.
A little over 24 hrs after surgery, that sounds too casual, after BRAIN SURGERY, there, that feels better, Ian’s speech became harder to understand. His eyelids became droopy. His eyes were not tracking together (causing him to have double-vision and get to wear a pirate eye-patch on alternating eyes to block out one of the double images). His gross and fine motor skills deteriorated. He lost his ability to swallow.
My strapping lad, my 6′ 2″, 140-some pounds, incredibly healthy teenage son was being fed through a tube down his nose because he lost the ability TO SWALLOW. In many ways, posterior fossa syndrome appears as though the patient has had a stroke, but with no signs of reason why. The CT looks clean. Medical mystery.
I’ve broken down so many times, just crying out to God, and I just keep hearing this…
Why art thou cast down, O my soul? and why art thou disquieted in me? hope thou in God: for I shall yet praise him for the help of his countenance.
Psalm 42:5 KJV
There IS hope, and I have it, by His grace, and I truly shall yet praise His name, though it may be with a tear-streaked face…
Cancer is a hard word to hear, a hard reality to deal with, and yet it still seems sort of unreal. You can’t see it. You can’t feel it. Treatment (radiation and chemo) hasn’t started yet, so it still seems like some obscure thing on the horizon, or like some sort of invisible enemy.
But Posterior Fossa Syndrome isn’t on the horizon, and it’s not invisible- it’s staring us in the face, and it’s the hardest thing right now.
I’ve been watching my son relearn to speak, relearn to eat, relearn to use the remote- it’s a skill. I’ve been watching him relearn to walk, with two assistants at a time. I’ve watched him as 2 occupational therapists work with him relearn to wash his face and brush his teeth. A week and a day ago, he could do all of those things, without the assistants and therapists.
Heart. Break. Ing.
It’s coming back, all of it, one baby step at a time. He’s getting a little stronger every day and all of the therapists are very encouraging about that, which I’m so thankful for. When you’re starting from as far back from strong as he was, a little stronger every day is great, but it still means that there is a very long way to go. They have him working with speech therapy every day, and physical therapy and occupational therapy twice each day already. Who would’ve ever thought that a game of Connect 4 would become a grueling workout? I never saw that one coming.
I’m so tired. The commuting is getting old, leaving him there is hard, figuring out the logistics of finding babysitters for the rest of our children is rather crazy, but seeing His hand on our lives each day will never get old, hard, or crazy…
Ok, I’m really yawning wide and long now, but I have to share this- one of Ian’s friends from the local Christian school soccer team started a facebook prayer “event” for Ian, and asked people to share with people who will ask people to share and on and on (kind of like the song that never ends, it just goes on and on my friends) and when I got a message about it, saying that there were 550 people praying for Ian, I was so touched. I teared up. I went to comment, and there were 644. After my comment there were 658. By the time we told Ian about it there were about 1,400, and 2,700 by the next morning. I’ve checked in several times a day and have been so choked up every time I see that number go up.
The last I checked, there were 17,983 people who had clicked “attending”, with 73, 224 people awaiting a reply (after being invited by someone).
It’s overwhelming me, us.
Also- our van, it seems it was running, well, mostly-sort-of-sometimes-running on 6 of 8 cylinders. I’m no car guy, but I know that’s not the way those things are supposed to run. And I know that engine repairs don’t come cheap. That mechanic who called? He’s a christian guy who’s doing the work for pretty much the cost of the parts, something like a 45% discount, we were not expecting that! Praying that the Lord would bless him for his generosity and helpfulness (and that He would bless the family that called the mechanic!)
The local homeschool community has been so awesome in stepping up to feed us some pretty incredible meals and helping out with childcare.
Our families have been such a blessing.
The body of Christ has been beautiful.
Thursday’s major prayer request-
Please join us in praying that today’s full-spine MRI will be clear with NO signs that this cancer has spread!
**Update**- The MRI was bumped until late Friday afternoon. More waiting, but that just gives us more time to pray, right?!