Sunday, October 25, 2015

Life, Cancer, and everything in between

I know it has been forever since I updated. Life is too chaotic for my liking right now.

Good news: Mackenna, our youngest, does not have cancer. Her eyes are perfect, and the reflection we saw was just her optic nerve. As she has gotten older(and is now almost one year old) her eyes have no reflection whatsoever. So we are good there!


For the bad news.

Quinn, our retinoblastoma survivor, my amazing little man who has been through so much in his short, three years of life... Well, he might have cancer. Again.

Great, right? Of fucking course. This is exactly what needs to happen!

So, what kind of cancer? His brain, of course. 

Why on earth would it be anywhere else?!

So there's this thing. Quinn has the hereditary form of his cancer. In other words, he has a genetic mutation in his blood that caused his cancer. Thus putting him at risk for many other kinds of cancers over his life time. Bone, lung, skin, brain, and that's just what I can remember.

Right now, though, there's a funny little thing. Trilateral Retinoblastoma. Never heard of it? Neither had we for a moment. Well, let's get to the back story first, before I go completely into that.

So last year, Quinn's MRI showed a cystic like mass on his pineal gland. No one brought it to our attention, or said anything about it. We actually found out by reading this new portal the hospital has. Last year, this mass was 5mm. This year it is 7mm. His pediatrician is not comfortable with this. At all. And now we will get to the point of this in relation to Trilateral Retinoblastoma

"Children with hereditary retinoblastoma also have a small risk of developing a tumor in the pineal gland within a few years. (This is known as trilateral retinoblastoma.) The pineal gland is a bean-sized structure lying under the middle of the brain. It can have cells similar to retina cells, which is why tumors can start there. This is why doctors often recommend that MRI scans of the head be done regularly for up to 5 years to try to detect such tumors as early as possible."

There you go ladies and gents. That's the terrifying part. My son has a "cystic like mass" on his pineal gland. And where does this other form of his cancer show up? On his fucking pineal gland. And it can happen within a few years of treatment. And he's more at risk due to his genetic disposition.

Can I say something real quick?
Fucking, really?!

Anyways, on top of that...he has been having periods of aggression almost like a blind aggression. Disorientation. Headaches. Eye pain where there is no eye. Confusion. Speech issues. Moments where he can't communicate. One minute he understands, next minute it's like he doesn't understand common English.

All of which, of course, are related to pineal freaking tumors.

So here we are. 
Going down this path again.
Scared to death.=
Worried about everything.
The referrals have been made for him to go back to UC Davis in Sacramento.
Back to that hospital.
Back to where his eye was removed..
Where he went through so much pain, and trauma. 

He has to see a neurologist, oncologist, and ophthalmologist.

His pediatrician wonders if, perhaps, elective surgery to remove it may be a better alternative. Instead of just waiting, watching, seeing what it does. Watching him deteriorate. Which would involve brain surgery.
Fucking brain surgery. And not just that, but it would most likely be a craniotomy.  Cutting his freaking skull open.

But I don't know. I don't know how to function with this. I don't know how to handle this. I DON'T, remind you DO NOT want to do this again. 

I'm in a state between utter destruction emotionally, and breaking into a ball of tears.

Anyways, until then.
We wait for appointments.
We wait for D-DAY. 
We wait.

Waiting sucks. 

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