Bad News...

[Chamber]

Well, not alot of you know me here, but quite a few do, so i thought i'd post this here and let you guys know what is currently going. This is also probably going to stop me from going to this years fan faire, but i'm still gonna try to pop in for a bit since it is close this year.

 

I'm just gonna copy and paste what i've already posted somewhere else, cause it's alot that i don't really want to type out again. But story background is last Sun, we found a brain tumor in my 3 year old's brain, that was originally thought to be a different type of tumor. Surgery was yesterday and this is what we know so far:

 

The is not the type of tumor they originally thought it was. It is a much milder "type" of tumor called ganglioglioma. Which is good because it is not a very aggresive type of tumor. The bad part is that it started growing inside the brain stem instead of outside like we orginally though. So i grew "into" all the parts inside the brain stem, and they could only remove about 80% of it. If they touched that part of the tumor, it would've turned Tyler into a vegetable for his life, so needless to say it stayed.

 

I guess this is a very rare thing, as there are only 60 reported tumors like this in history. I'm not sure if the type of tumor is so rare, or the location of it, i forgot to ask the doctor that question, but will be talking to him alot more in depth in the next few days while we try to figure out someway to treat the remainder of the tumor.

 

From what he said, there is no cure, and really no treatment, as this type of tumor doesn't react to Chemo and radiation like other tumors do. So it sounds like we will just be keeping an eye on it to make sure it doesn't grow or spread. But, unfortunatly, this will be a lifelong issue for him.

 

So far, it seems like the only imediate concerns the doctor has is that the nerves that control his left eye, and his left hearing looked a little damaged. He said that his left eye is very weak and isn't really moving properly. Also it looks like he will be deaf in his left ear also. But we won't really know until we do some more tests over the next few days. Right now we want to make sure he is able to swallow ok, cause they nerve was slightly bruised during the operation.

 

So, i think that is about all that is going on at this point. We won't have the pathology report until next week, proabably about Thurs. which will go into more depth on what to do from this point.

 

So, if you guys could please just think about us, and keep us in your prayers, it would mean alot to us.

[Shodan]

Thank you for letting us know. Pray for you and yours I will.

[Rashad]

I want your family to gain strength from these perilous times.

 

So, if you guys could please just think about us, and keep us in your prayers, it would mean alot to us.

<{POST_SNAPBACK}>

 

I will.

[MrDuke]

Oh man, we are praying for you on our end.

If you feel like talking, PM me. It's tough being a dad of a child w/ cancer.

 

Stay strong, brother!

 

Brian

[MrDuke]

Just wanted you to know I'm praying for your son.

 

Give us some updates (or just vent) when able.

[whudats]

We are praying for you guys, and especially for your little one.

 

Please keep us updated as to how things are going.

 

Greg

[Gunman]

Anything you need just ask...I am serious...anything...

 

Adam

[Chamber]

Well, i thought i'd post an update since i haven't been able to in a while. But first i'd like to thank you all for your thoguht's and prayers. It has helped more then any of you can imagine.

 

So, after surgery it seemed like everything was going good. Then we ran into quite a few complications. First, when we removed the breathing tube 2 days after surgery, his left lung collapsed. So we have been working on that and it seems like it is all better now, thankfully. Also, the left side of his vocal cords are paralyzed, and not working. It was a mjor concern at first, cause you can't swallow without them working. But he is swallowing fine, and just now starting to eat some. So hopefully he can get his feeding tube out in the next few days and not come home with it in.

 

He was also creating to much brain/spinal fluid and they had to put a spical cathader in to drain some out cause it was creating BAD headaches. But he finally got that removed 2 days ago. They also found a serious infection in his spinal fluid. At first they said it was a form of meningitis, but not the contaigous kind. But now they are saying it is a staff infection. He has been on VERY strong medication, but it hasn't really left yet. The infectious disease doctor thinks it's cause of the drain that was in, so that is why they took it out. So hopefully that will work. It seems like he is doing ALOT better today, and finally really eating and a little more active. He is also getting a central port put into his chest today, for the chemo treatments and because we have ran out of veins to put IVs into. So that will give them a permanent IV hookup right into his chest.

 

We need to get him into physical therapy, since he has been in bed for so long, he can't even walk anymore. So we need to teach him how to walk and build up muscle mass again. Then in a few weeks when he is healed up nicely. We start his Chemotherapy. He has to go through a year of Chemo treatments once a week. Then hopefully, that will stop it from growing for a while. Then in a few years when he is a little older, they will try radiation to try and shrink it up some since it is impossible to touch it in surgery.

 

So now, we are just waiting for the medical bills to come in and all that fun stuff. This has destroyed us financially. We have spent our entire savings just on parking and food and stuff since he has been in there. But such is life

 

So that is what is going on so far. Thanks again for everything guys.

[whudats]

He sounds like quite a little trooper. Tougher than he should have to be...

 

We're still praying for your family, and especially your little one.

 

Thanks for the update.

[MrDuke]

Sorry to be blunt but I've learned to cut through the BS when dealing w/ cancer.

 

Focus on the positive and try not to focus on what you can't control. Right now you've got an exponential amount of good and bad information coming at you and it won't stop anytime soon.

Utilize www.caringbridge.com to keep other people informed of any news. Telling the same story 20 times on the phone drains your energy. Use your energy to focus on your child. STAY STRONG and STAY POSITIVE. Your family will feed off of your emotional state.

 

One thing that helped us is the Ronald McDonald house. If you have one at the hospital you're staying at, USE IT. They provide food and free parking.

 

Accepting help and charity in all forms was the hardest thing for me--learn to accept it now.

 

My wife Keli is just starting the volunteer process to help newly diagnosed families cope with the emotional roller-coaster of cancer. I KNOW she'll be happy to talk with you or your wife via phone or email.

 

I'm praying for you, brother. I PM'd you my number at work and at home. Call me to vent or just ask questions. Fatty let me vent when I went through Danielle's diagnosis and it helped immensely.

 

Grace be with you.

 

Brian

[Decoy]

Your family will be in mind. I haven't gotten to talk to you much lately, and it makes it even harder for me to have read that. Stay strong. Never give up hope. You're going to get through this just fine if you keep up a positive attitude.