Conner's new favorite t-shirt, from his buddy and mine, Nick M, a stuntman who worked on the movie in question. Conner says "Thanks Nick!" Nick generously sent him a stunt team shirt from Australia. 

Conner's first appointment

Met with Dr. Hugh Garton, ped. neurosurgeon, and Dr. Patricia Robertson, neurologist/oncologist at the University of Michigan hospital. Overall a very positive experience. Dr. Garton looked over the CT scans, and did some reflex and visual testing on Conner. Both Drs agreed that we had time to perform other testing, and the neurologist said she wasn't altogether sure that the tumor was causing Conner's headaches, partly due Conner's mother having the occasional migraine, but she didn't entirely rule it out. She prescribed periactin for him, saying that this antihisitmine can often help pediatric migraines, and that if it didn't help, then it wouldn't hurt either.

We were supposed to see Dr. Muraszko, but I hear Dr Garton mention she was in a surgery that ran over.

Both a calcified mass and a cystic abnormality were observed. Dr. Garton ordered a hormonal assay done, and also a visit to a neuropthalmologist and an MRI. After those tests are done, treatment options will be discusses as well as the folks at U of M helping to facilitate a second opinion if we want one.

Conner was very nervous getting his blood drawn, but he held still and was very brave. I was very impressed with his stoic attitude, and he asked the neurosurgeon if he could tell him how big his brain was after any potential surgery he'd have.

Dr. Garton told me that they see some cranios at the U of M hospital every year, and that he usually prefers to take a less aggressive approach to removing the tumor, if it's possible to preserve the pituitary function and hypothalmus function, and then follow up with accessory treatments if needed. Once again, he said that what was needed now was to gather more information, and that the information gathered at U of M would be useful anywhere we went for a second opinion.

Overall, I feel much more positive about Conner's treatment now. Both Drs Garton and Robertson took the time to make sure all our questions were answered. Dr. Garton did stress to us that Conner will need periodic monitoring for the rest of his life, no matter what the outcome.

Overall I was very pleased with this initial consultation. It was very positive, and, even though I know we are nowhere near to being out of the woods yet, I felt a tangible relief.

Finally

Tomorrow we go and meet with a well respected senior pediatric neurosurgeon and a pediatric neurologist/oncologist down in Ann Arbor.

The neurosurgeon is Dr. Karin Muraszko, who's the chair of the neurosurgery department at the U of M Medical School.

I'll be bringing my list of questions for her, inspired by what the folks on the cranio support group have taught me in the last week or so, as well as the list of experienced cranio pediatric neurosurgeons.

It's been a long, long wait. I am feeling cautiously optimistic right now, and will need to stay strong and cheerful for Conner.

The generous people from my strength sport message board, The Power and Bulk, have let me pick up a Sony PSP and a few games to help ease the waiting room time for Conner, he ought to be tickled.

The appointment tomorrow is going to be an initial consultation, with vision checks, and maybe some blood drawn for a hormonal assay, and with the neurosurgeon and the oncologist discussing Conner's CT scan as well.

I wrote this when they were very small

Two little boys, blond with brown eyes
Dancing with merriment and mischief

One bulldozes me, one bites my shirt
All of my time with them well spent

Hoping someday they'll grow tall and strong
And hoping that I will grow with them

And how will I feel, when they're not so small?
When they start to grow into men?

Changing me daily, and all for the better
I'm taught about patience and love

And as they lay sleeping, I watch and I listen
And kiss them, my gifts from above.

-written for Conner and his brother Gage, somewhere around 1997 or so.

Hurry up and wait

Probably not going to put much else down here until we consult with Dr. Murazsko on Monday, June 13th.

What was good about the weekend

-playing outside with everyone
-going on a hike at the Bay City State Park
-playing videogames with the boys
-watching Conner act normally and play with his friends from my neighborhood
-setting up a tent for Conner and his brother Gage
-having a campfire and s'mores.
-Conner and Gage abandoning the tent about 15 minutes after they went to bed

It was a nice weekend.

Gotta go now, Samara, the boy's little sister, needs me to play with her.

Good Weekend

Conner's mother, my ex-wife, had taken Conner into the emergency room twice last week for his headaches. Very worrying.

This past weekend, Conner felt ok on Friday night, then Saturday morning he got a headache around 8 AM, and I gave him the Tylenol 3 that the ER doctor prescribed and he slept for 3 1/2 hours. Then again, around 2:30 PM, he complained of more headache pain, and I made him lie down, gave him more Tylenol 3, and he slept for another 2 1/2 hours. After that he was fine Saturday night and Sunday until he went back to his mother's household.

Given that Conner had an exhausting week, he obviously needed the sleep.

His tumor hasn't changed in the week he was diagnosed, so why all of a sudden have his headaches gotten more severe? My opinion is that he's kind of scared now, and it's very stressful and frightening to have this going on all of a sudden.

So, he's been gone one day, and already has racked up another ER visit at Lapeer Regional. Poor kid.

I don't know what to think.

Basic Info

A craniopharyngioma is a benign, slow growing tumor that resides near the pituitary, which is kind of underneath the brain. The location is the kicker. Hard to get to, and the tumor itself is often too close to the pituitary.

Treatment is typically a surgical attempt at total removal, or a combination of surgery and radiation therapy. Complications occur when this disrupts the nerves to the eyes, the pituitary, or the hypothalamus. Some sort of hormone replacement therapy is indicated in most patients. This is something I am working on getting my head around...and it's hard. Another thing that's hard:

The tumor can come back.

Google "craniopharyngioma" and you'll come up with lots and lots of information. I might or might not compile some here. Some if the information is downright disheartening. After doing a few days worth of research I spiraled into a black funk that was hard to shake.

Anyway, here's the search:

Craniopharyngioma

Despair.

Yet, in the darkness, there's hope. There is an online support group. Once again, google "Craniopharyngioma Support Group". Once again, the link to the google search is below:

Light in the Darkness

I joined the email list. I received a lot of information from concerned and caring folks who'd been there before me. They provided me with a lot of initial information and with important questions to ask the pediatric neurosurgeon when I consult with her.

Tenatively, Conner's first consultation will be on June 13th, at 2 PM. Dr. Karin Muraszko, the Chair of the Neurosurgery Deptartment at the University of Michigan, or her partner in practice, Dr. Hugh Barton will be the one's Conner sees.

That's 7 days away. 7 days of hope, 7 days of despair. 7 days of Conner suffering through the headaches that brought us to the diagnosis.

Conner, March 2005 

One Moment and Everything Changes

I am going to see if I can document this. I can't guarantee anything. Right now it's making me feel better, but I have no idea if this will hold true.

I have no idea where the end of this journey lies, and I hope that if I can manage to maintain this blog, that I might also be able to help other parents with children diagnosed with craniopharyngioma. Nothing, and I repeat, nothing in my life has shaken and scared me this badly.

My son was diagnosed with a craniopharyngioma on 5/27/05. He'd been having recurring headaches, and his pediatrian had him in for a CT scan. About 3 hours later, the doctor called with this terrifying news.

My youngest boy has a brain tumor....

I have to maintain a calm outer demeanor, because I don't want to scare him. I look, and he's in the backseat cracking wise with his brother Gage. He's only 9 1/2 years old. I look at Gage, who's just turned 11 a week ago. This is one time Gage won't be able to have Conner's back.

One moment, one phrase, and my world is blown wide open, and darkness rushes into my heart.

One moment, and everything changes