Thursday, May 30, 2013

An update, without an update.

Today was our follow up with neuro-oncology.

As we sat in the waiting room I saw 3 other little babies about Liam's age.  One obviously was pretty sick he had the "cancer kid" look.  He was pale, had no hair, and was thin- but he was smiling and playing.  I felt bad for praying that my kid wasn't going to be a "cancer kid".  The other 2 babies looked "normal"- I wondered why they were there.  Were they waiting on their prognosis too?  Were they wondering why we were there?

After what seemed like forever, the doctor finally came in.
It's a tumor. It's in his brain stem.  It's inoperable. (yes yes yes- this I know).  And here comes the frustrating part.  That's STILL all we KNOW.  (WHAT!?)

The "tumor board" met and discussed Liam's case.  They all seemed to agree.  The diagnosis is likely a "low grade glioma".  Here's why they think it's "low grade"-- He's NORMAL.  
The MRI showed the tumor to be "intrinsic" meaning growing in the brain tissue, not on it.  If it were "extrinsic" they could basically shave it off like a wart.  Most low grade gliomas are extrinsic, the bad ones are intrinsic, but the bad ones cause symptoms.  Liam is NORMAL.  He has no neurologic symptoms.

Best case scenario:  Liam was born with this tumor, it doesn't grow, EVER. He gets to be an old guy- just an old guy with a brain tumor.

Worst case scenario: Whoops- It's not a low grade glioma, it's a high grade glioma.  Liam has 6-12 months to live.
Let's hope for best case scenario.

We were given option to start chemotherapy- but of course that comes with side effects- and- if the best case scenario were to happen, we don't need it.  The doctor recommended a "wait and see" approach.  Basically we will repeat the MRI in 3 months to see if it has grown.  If it doesn't grow, we repeat an MRI in 3 months, every 3 months for a year. Then every 6 months, then annually.  If it grows a little, we will start chemo.  If it grows a LOT, we will start chemo and radiation (and that means it's a high grade glioma and the worst case scenario).

We will be sent to see a pedi-neurologist so he can monitor Liam for any slight neurologic symptoms, like changes in reflexes or slight changes in strength that we as parents may miss since we are with him every day.

So now we wait.  We pray. And we continue living life.  Thank you all so very much for your prayers, well wishes, and positive vibes.  I truly feel as though Liam is destined for the best case scenario.

Love you all-
The HOGANS (Jamie, Chase, and Liam)

Wednesday, May 29, 2013

A who in whoville

Have you ever seen the movie- Horton Hears a Who?  You know the part at the end when all the Who's have to make as much noise as possible to get the "people" other than Horton to hear they exist on the clover flower- that's how I've been feeling lately.  I feel as though if I can just get one more person to pray maybe God will hear and grant me my miracle.

I'm a Who in Whoville, desperate to be heard.

Let me back up-
May 20th I took my son in for a routine MRI because he has strabismus and a big head.  It was supposed to be nothing.  It was supposed to be routine.  It was just to "be sure everything was fine".  Well, in the end, everything wasn't fine.

There was a spot- a likely mass.  A big spot- in his brain stem. IN HIS BRAIN STEM.  I was told this over the telephone at 6:05 pm by my pediatrician.  I was still sitting in the hospital in the radiology department.
Then I had to tell my husband

Exactly one hour later I was told I had an appointment with a pediatric neuro-oncologist and a pediatric neurosurgeon the following day.  I didn't even know there was such a thing as a pediatric neuro-oncologist.

The mass is likely a glioma. A brain tumor.  An INOPERABLE brain tumor..............

My world has been flipped upside down, inside out, and thrown in every which way you could imagine.  My heart has broken.  My mind has shut down.  I don't know what to think.  I don't know what to do.  So I pray.  I pray whenever I have a spare second to myself.  I pray before bed, I pray when I wake up.  I pray before meals, I pray after meals.  I pray constantly.

People keep asking me how I'm doing- I. DON'T. KNOW.

I am a Who in Whoville, please Lord hear me.