Deterioration

I may just be paranoid, or I might be right.

But I think Quinn is deteriorating

I think that things are getting worse.

He was potty training really well, and then all of the sudden he stopped doing so. He stopped doing it routinely. He was good for about two weeks, and now we are back in diapers. Now we are back to baby type times. I fear the worst in this case scenario.

On top of that, you can see his issues. He's running into walls more again, getting knocked over, disoriented, begging for naps, and just not acting "normal." Whatever level of normal there is for him. But it's scaring me.

This momma is terrified. I fear the worst. I fear there is a tumor. He's getting goose eggs like crazy, and just not oriented physically. It's reminding me of when he was undergoing treatment again.

And today, this momma had to put her cancer mom pants on again. The doctor on Friday said he needs to be seen by his old hospital and doctors at UC Davis. That it was urgent, and I should start making phone calls to get it started. So I did. Come to find out, they hadn't received anything from his doctor at all. So I called the doctors office, and apparently they didn't mark it as "urgent." The referral department proceeded to tell me that they will get to it when they can. Seriously? Brain cancer possibility and you're just going to give me a "we'll get to it when we get to it." No, that's not OK. So I spoke with the nurse, who at this point knows me very well, and explained to her. She said it was a matter of buttons, and that the doctor must have not clicked the right one.

I love her, by the way. Absolutely adore her. She fixed it, got it set up, AND spoke with the woman I spoke with in the referral department. I should be able to make those calls tomorrow to get everything situated. And trust me, they will hear from me every hour on the hour until I have what I want. Like I said, my cancer mom pants are back on, and shit will get done. No matter how hard I have to push. I'm not here for you to like me, I'm here for you to give me what I and my son need. I'm sorry if that bothers you.
Don't worry, I'm never an asshole. I just get blunt, and sometimes slightly curt with them. I know what I'm talking about. I guess having the experiences I have has put me in this position.

Not that I ever wanted to be in this position.

So here's to another day, another bought of problems, and another bought of fighting with medical professionals who feel the need to demean you.

Can I just say, for those of you who are in the medical profession - please don't disregard the parents thoughts and feelings. Doing that makes them feel like they are useless when it comes to their childs care, and does nothing to help the situation except maybe make them less likely to contact you with problems. Or stay with you for care.

And I'm speaking from a momma who is trying to get into nursing school. Who was in a nursing program, and understands. It's hard. Parents are hard. But in these times, we need your empathy, not your blindsided looking down upon.


That is all.

Until tomorrow.

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!

Now

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?
Really?!
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. 

F*** Me

Of course.
Of fucking course.

So during my pregnancy, my husband and I both tested negative for the mutation of Quinn's cancer. WOOHOO, we thought. HOORAY!!!! we thought.

Come to find out.
That's a damn lie.

Our baby girl was born 11/12/2014, and she's had some issues. But she's been good. Nothing horrible. Nothing bad. Just some bumps. But then it happened.

That stupid cats eye reflex.
That stupid yellow/white/pinky colored pupil that glares us in the face, and makes my heart drop into the pit of my stomach.
I swear I could throw up at the thought of that image. Of the thought of her having it. Of the fact I freaking saw it. AGAIN!!

I was taking a video of my husband holding her, and it was there. Occasionally when she was at a different angle it would be red. I hope to god that it's a fluke. That my camera, and my husband's camera just screws up her eyes. That we are just lucky enough to see it occasionally. But my heart is telling me that's not the case...

Ironically enough we were seeing Quinn's oncologist today. Which, by the way, he's freaking PERFECT! However, we decided to bring our concerns up to the doctor because we hadn't had much luck getting a hold of the pediatrician. She looked at my pictures, and videos. She decided to immediately call our pediatrician, and get her attention. She called the pediatrician to see what she wanted to do next. So the pediatrician called the opthalmologist, and ordered a referral STAT. The ophalmologist called us this afternoon, and we have an appointment Monday. Everyone working so quickly kind of makes me nervous.

Both my husband and I just think.
We think she has it.
Her eyes have always seemed a bit off.
I'm so scared.

 I don't want to do this again....